Thursday, October 1, 2009

Opening a can of worms? Upcoming miscarriage doc appointment

We have an appointment with a reproductive immunologist in New York City on Monday. Perhaps he is the miscarriage wizard we have been seeking.

Or perhaps not.

I made this appointment back in August, right after our fifth miscarriage (yes, this was the first available). I then promptly forgot about it. And now it is here. And I'm not sure what to do.

I have been doing a lot of research on immune issues and pregnancy and am finding the scientific evidence is as clear as mud. It's very controversial, so much so that many of these immunological tests are not run in academic centers (we've had the ones that are: APA, thrombophilia stuff, thyroid issues. all normal).
It is hard to tell if seeing this doctor will be part of looking under every stone and possibly finding a solution to at least part of our problem. He won't be able to fix our chromosome issues, but if there's also an implantation issue, then maybe, just maybe he could do something to help.
On the other hand, maybe his controversial treatments could actually make things worse. (Worse! Ha! Hard to believe, but I'm sure it's possible.) Just to recap, we know that three of our losses were due to wonky chromosomes but the other two...not so clear...and we also had three failed IVFs...some of them with crazy numbers of embryos transferred, which maybe didn't take because they were all abnormal, or maybe didn't take because we have some other implantation issue.
And of course there's the small issue that this guru guy doesn't take any insurance, so we'll be shelling out a decent amount of cash to see him and for the testing and then to see him again to hear his opinion on the testing.
My husband Will and I have been on a much needed puppy-induced hiatus from thinking and talking about infertility/pregnancy/etc. But if I'm not going to go to this appointment, I'll need to cancel it, probably by tomorrow. Will and I have gone back and forth on it and have struggled to come to a decision. One of Will's concerns is that seeing this physician will just open up a can of worms (as he likes to put it), where some vague problem will be identified (e.g., elevated natural killer cells or antisperm antibodies or DQ alpha whatever whatever that suggest using IVIG or intralipids). Things that we won't know exactly what to do with or their significance, since the research is scant, contradictory, and often poorly excuted. And that this might just leave us back where we are. Or at an even worse place then where we already are, filled with greater doubts and anxieties than we currently have, and still no clear path.
I hear that. I'm not interested in a can of worms or a wild goose chase, or a bunch of geese chasing worms, or, well, you know what I mean. But I am also a fairly die-hard information seeker (which I'm sure comes as no surprise to regular readers).
So, Blogworld, what do you think? Should we go ahead and go? Or not go? Please chime in. I'd like to hear all of your thoughts. I am especially interested to hear what you think if you come from a medical background or have any experience/knowledge of the more controversial immunological stuff.
Don't worry, we'll ultimately make our own decision, but let us know, what would you do? And why?

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  1. Wow. Hmmm. Honestly, I think I would go - mostly because I am also a rabid information-seeker, and because if I didn't go, I would always wonder if his information could have made a difference.

    But then again, I've made so many decisions in the last four years that I never imagined making - so I could be completely wrong.

  2. Urgh, what a tough one. If it were me I would probably go, just to get another opinion. I know you have had many many opinions already but my view would be the more informed perspectives the better.

    But I completely understand your cautious stance and the reasons why you would cancel.

    Good luck with your decision.

  3. If I were making the decision (and I just did a few months ago), I would hold off and do a cycle with CGH/Microarray to see if you have any "normal" embryos to transfer. If you do, then before doing your transfer you can explore the immunological aspect. If you don't have any normals to transfer, then at least you didn't waste more money on the immunological work-up.

    I have been told by quite a few people that the reproductive immunologists will always find something wrong with you. So, before you take that controversial step, I think it is more worthwhile to see if you have chromosomally normal embryos.

    That's my two cents, and what I did, for what it's worth.

    Good luck to you and Will in figuring out your next step--I know it's difficult. And, congrats on the puppy--he (or she? I can't remember) is adorable.

  4. Chill,

    Just one question about this...if we did CGH and didn't have any normals, that wouldn't really tell us that we would NEVER have any normals, would it? So then we'd be potentially faced with doing multiple cycles of CGH, yes? Or did CCRM tell you something else? Thanks.


  5. Hmm....I agree with most of the group. I would go...cause then Id always be wondering if he was the one with the answers.
    Good Luck! Let us know if you go and how it goes if you do.

  6. I think you should go. You said it yourself, you're a die-hard information seeker. You're also brilliant enough (you AND Will) to know the difference between helpful information and information that will drive you mad. Given that, I think that if you don't go, you will always wonder what they might have found, told you, etc. It's time for some damn answers. :)

  7. I would go to the appointment. I, like you, am an information seeker. I would hate to cancel it and then regret it. You have to wait so long for an appointment, I would not want to reschedule later.
    You have a good head on your shoulders. If he tells you things that are far-fetched, then move on wih the CGH and don't get all the tests done and follow his advice.
    Good luck!

  8. I do believe I would go.
    You could completely ignore everything he says, if you like. I was all about checking out every option so that I at least knew if I called it quits that I had exhausted all possibilities. So if it was me... I'd go:)

  9. I would go - I would always wonder if he had the Answer - and I agree that you can always blow off what he says.

  10. Go. Knowledge is power. BTW, my DH is an MD and he says go, too.

  11. I'd go and listen to what he has to say. Then make the treatment decision. You are assuming here that he can help you, will not take your insurance and will not find the problem. It is quite possible he will say "sorry, can't help you".

    No loss, no gain.

    Good Luck with whatever you decide

  12. Hi -- de-lurking because, well, you know.

    So, since I'm new here, first, I am so, so, so, so sorry for your losses. That is the most inadequate thing to say, but, I feel it.

    On the appointment, of course you know that you have to follow your heart. If you're worried you will regret not going, than go. It sounds like it might raise more questions than it answers, which might be a good thing or might be infuriating. I would probably go, eventually, no stone unturned, all that.

    But, really, what I de-lurked to say, is that, first, if it were me, I'd take all that you're going to invest in the wizard and I'd try adding acupuncture w/ or w/out the rest of the whole TCM thing. You've read the studies and the books (I like Radine Lewis'), you're an information seeker and a scientist. I know it can sound crazy, but that's what I'd try.

    I first came to TCM for non-baby-making-related health stuff (hives, which it cured when strong western meds couldn't) and used it during my IVF cycle (which worked) and subsequent FET (which didn't). (I just did the acupuncture, couldn't get comfortable with all the herbs and supplements.) So sorry if this comes across as stupid assvice or if you've already tried it and hated it but I didn't read back far enough to see, or any of that. Most of all, love to you,

  13. I would go. it is always good to find out more information. he might find the problem, and it just might have a cure. you never know. but go.

  14. Mo, I think it couldn't hurt to go-- you and Will are so knowledgeable that you will able to suss out whether this is likely to be a wild-goose chase or not.
    To answer your question about CGH at CCRM, I remember being told by their genetic counselor that if we had no normal embryos after one cycle, there was a low probability that we would produce any in a future cycle. We decided that if we had no normals after one (or possibly two) CGH cycles, we'd move on. If I were you, I would call their genetic counselors and confirm that they are still finding this to be true. Hope that is helpful!

  15. If you're anything like me you will wonder "what if..." if you don't at least go to the first visit. If you think he's way off or don't want to do the testing right away, at least you can get an initial read on him. It is frustrating, though, that after everything you've been through that you have to add his full costs onto the list since doesn't accept insurance. I know that ultimately you guys will trust your hearts and make the best decision. And you can always make another appointment down the road if you decide to not go right now.

    And Moxie? Precious!!

  16. I'd go, jsut to see what he has to say. YOu don't have to sign up to do the testing, right?

  17. Mo-

    I asked Dr. Surrey at CCRM that question--if we have no normal embryos, can we extrapolate that to mean that all would be abnormal? He said they have had one patient who had all abnormals and went on to have one normal--and did not get pregnant from that one normal. Basically, you can safely assume that if all are of your tested embryos are abnormal, they really are. However, I think it is easier to extrapolate based on the number of embryos you have. If you have only one and it tests abnormal, it certainly doesn't tell you as much as 5 testing abnormal. Not really a definite, as nothing is. But, somewhat of an answer.

  18. Well, part of me wants you to go just because I'm so curious.

    But I don't know if "I" would do it, if it were me.

    Definitely a tough decision.

  19. I think I would go to the appointment. You and I seem extremely similar in the "need to know" department and if I knew that this specialist "could" put me more in the know, then I think I would go with it. Although it could go the other way completely making things worse, at least this way you know you tried. I dont know. This is definately a tough one. I hope you guys are able to come to an agreement :) Thinking of you!

  20. I would ABSOLUTELY go. Information = power. But then, I bet you would guess that I would say that.

  21. I would go. In my world, collecting information helps you make decisions.

    I have just discovered I DO have thryroid issues: reverse T3 dominance. Reverse T3 is not often tested, and thus this problem easily overlooked. If you are feeling like 'in for a penny, in for a pound' on the gamut of testing, and you haven't had this run, I would advocate doing it, if only to rule it out and ease your mind. It has to be done at the same time as T3, so you can compare the ratio. if the ratio between T3 and reverse T3 is less than 1, you have a problem. This problem can cause early miscarriage. It is treatable.

  22. I know this is a hard decision but if it were me I think I would definitely do it. I don't think I could live wondering if going to that doctor would have made the difference or not. I know it may open a can of worms but like I said to me I think it would be better then not knowing. I am a total info seeker so I would HAVE to know and HAVE to know I did everything that I could do(afford). Good Luck with whatever you decide to do!

  23. I would go.

    But if you asked me if you should go, I'd say, "If you do it and it doesn't help, will you regret having done it?" And then if you said, "No," I'd say, "You should go."

    Chill says that, "I have been told by quite a few people that the reproductive immunologists will always find something wrong with you," but they didn't find anything wrong with me. I went to one, she said I was all fine. Turns out she seems to have been right as after doing that I had an IVF that worked but up until then I was 0 for 3 on fresh and 0 for 2 on frozen transfers (though always at the BFN stage, not later).

  24. I would go, I would at least want to hear some sort of diagnosis and then decide what route to take. I would hate to have to look back and say I didn't at least look into "the wizard"
    I would also try to remember my dreams, sound crazy but sometimes they give clues as to what your thinking deep down, what your intuition is saying.

  25. I'm going to go against the grain here - I can't say what I would do or what you should do.

    I do think, though, that at some point, in order to make peace with where you are, you will have to decide to stop seeking the elusive answers.

    The thing is that there is always going to be a chance it's some other thing -- and there will always be someone, somewhere, who will try to fix that thing. Medical science isn't good at helping us decide when to let go. We have to make that choice ourselves, and it is so hard to do... and so unfair that some of us have to.

    Good luck Mo.

  26. I would go. I'm a scientist, and part of being scientists is that you want to know. You can always hear what he has to say, ignore it, and move on. I think gathering as much information as you can is valuable to both of you, as I think you are both more versed on the basic science knowledge than the average infertile.

    Take it one step at a time. You've already progressed to the point where he delivers you your results; worry about this first appt and tackle later testing or appts when/if you get there. (And since you're self-pay, negotiate!)

  27. I don't know what I would do. I often don't know until I get to that point myself. You've already gotten a lot of information. I know that you could see 5 doctors on the same subject, and you will get 5 opinions. Maybe some of those opinions are similar, but they all are different in some way. I also don't think you are going to get THE answer you are looking for. I don't think any doctor is going to give you an exact answer, unless they are completely arrogant. You'll get an opinion, but I don't think it's going to be black and white. This is just my experience of seeing lots of doctors myself. So if you think it helps, go. If you just think it's going to confuse you more, then save your money and frustration.

  28. Wow, everyone is saying go! I know you will do what you feel is right in your heart, but if it were me I *think* I would go too.

    If you go, you will have a reaction to this doctor, and since you are a highly trained medical professional, I would trust whatever reaction you have. If you think, this guy's a quack, there ya go. But he may actually have something new to add!

    The other option I can forsee is that he wouldn't add anything, just confirm what you already know (murky though it is). And while that isn't particularly helpful, it doesn't hurt to know you're on the right track.

    I hope this is helpful, and you feel peace with whatever decision you make!

  29. I think you would probably always question if you don't go. I went for all those crazy tests after my 3rd failed IVF and slightly elevated NK cells came back. The RE told me I needed all these steroids and IVIg and scared me. He actually told me that I would have m/cs and it would be my fault for not treating the NK cells. He did the same thing to 2 other women and all of us had babies without IVIg go figure. So take that test with a grain of salt. If it comes back elevated proper procedure would be to retest but also I have found literature that blood NK levels and uterine NK levels do not correlate. I am VERY skeptical about that test.

    Just warning that you might end up more confused not less in the end but you will have more information and decisions to make.

  30. I'd say go. I'm one that likes to collect all data points, then decide my own course. I'd be interested to hear this doc's take. And since you have the training to critically evaluate research, you can decide how much what he says, and the research that backs him up, will weigh into your future decisions.

    But I'd also say don't expect a definitive answer from him. I think you are to the point that whatever is going on with you, it is highly likely it is multi-factorial. So no one answer will be there. Which is hard.

  31. Wow - I'm really going against the grain here. I don't think you should spend the money to go before doing the cycle with CGH/Microarray. But that is just me.

    Good luck with this next step wither way!

  32. I would go because I want problems to have solutions.

    I had two m/c in a row, had some testing (including for the NK cells), and they couldn't really figure out what was wrong with me. I have the lupus indicator (elevated ANAs) but no lupus - probably due to my dad's Rheumatoid Arthritis. I used the heparin/baby aspirin protocol, which my regular doctor was very snide about. So I switched doctors. Anyway, I'd rather have someone do all the blood work, so I could use that to get my ducks in a row.

    Also, just because guru guy doesn't take insurance doesn't mean insurance won't cover it. You might have to pay out on the front end, but can you get reimbursed (at least partially)? We harassed our insurance company into covering a portion of our testing.

  33. I haven't come by in a bit, but if you will forgive me, I will put in my 2 cents.

    If you think it would give you even temporary satisfaction (I was rabid about getting information before LB was conceived) then it may be worth it. The down side is that we are wired to believe what we are told and we need to actively reject the idea (one experiment found that if people were told an obvious lie - like you are seeing a banana when they were looking an an apple - and then sufficiently distracted they would remember seeing the banana - they didn't have time to think, "no, it is an apple.) Meaning, that it might be easy to suddenly see this as THE ANSWER and spend a bunch of money on something that won't work.

    Like you found, the research just doesn't support it at this time and may never will. I know my RE doesn't believe in it saying, "If we had a lot of uterine issues, we wouldn't see an 80% live birth rate with donor eggs."

    We had 2 early miscarriages - both karyotypes (sp?) came back normal female so they may or may not have been mine. We also had a son who was non-viable outside the womb who had normal numbers of chromosomes although cgh might have shown something. Anyway, the solution for us seemed to be DE.

    May you find peace and parenthood no matter which path you decide on.

  34. My SIL is an acupuncturist on the east coast who specializes in infertility. She has seen the MD in NYC that you have an appointment with. She said that this doctor is very successful in treating RPL. She has referred many patients to this reprodcutive immunologist and said they have had really good luck!

    I forwarded this post to her and she said to definitely keep the appointment with the doctor.

  35. I say go for it. What do you have to lose? At least you will leave the office armed with the information that you need.

    I just read another blog where they decided to go see a reproductive immunologist. If you do decide to go, I can't wait to see what kind of information you may have to share with the rest of us who are struggling.

    Good luck!

  36. I am sort of facing the same issue. 7 failed dembryo transfers from 3 IVF cycles. I live in Egypt and I am not sure if they even do this testing here. I am meeting with my RE tonight to see what he says as we are planning IVF #4 next month. I too have done alot of reading on this immune testing and have like you found pros and cons. I am not sure if this testing is available to me here, i will now tonight. May I ask what other tests, if any, in addition to the ones you listed in this post you did? Best of luck in whatever you decide to do.

  37. I would go. Even if it didn't end up making the mud any clearer, I'd always wonder if I didn't go. I need to know I tried everything I could.

  38. I think you should go.

    You are still seeking answers.

    You are a trained scientist. I am sure that you are capable of evaluating the information you are hearing. If you don't like what he says, you are under no obligation to go forward with the testing, or go back for future appointments.

    I agree that some of the research on RI is rubbish and a lot of doctors don't believe in it. But there is evidence out there, and RI has helped a lot of people. For a lot of personal stories you can visit the RI boards on Yahoo.

    I will say something on the elevated NK cell testing. Yes, elevated blood tests may or may not indicate a problem. But they may indicate that your uterine NK is elevated - this can only be tested by a biopsy. Yes, some docs will recommend IVIG or intralipids for elevated uNK. But this can also be treated simply with steroids (prednisone, dexamethasone) and some women respond to that.

    In my opinion there is enough evidence out there that certain antibodies do cause RPL and autoimmune reproductive failure - NK, anti-thryroid, and anti-ovarian antibody being the main ones that spring to mind.

    I think with your history of chemotherapy you can't discount immune problems. At the same time, I think it would be valuable for you to do CGH.

    You are in a really tough position. I hope you find answers. I wish you all the best. Good luck on your journey. Wishing you peace whatever you decide.

  39. I would definetly go, it might help or it might not, the possibility that it might give you some information that could lead to something good is worth it to me.

    And I totally get the information seeking part as a "scientist" that has sold his soul to the devil (working in the pharmaceutical industry and not researching). I wouldn´t be able to not go.

  40. I would probably go to the appointment and then make a decision about how to proceed. The few hundred dollars for the consult seems like a small price (considering the cost of ivf, etc).

    I am with you on info collection. I love collection, hate decisions.


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