Overwhelmed…what would you do?


In spite of the wonderful news that MH and I do not have to contend with alloimmune issues (thank you to everyone who offered me advice and a shoulder to lean on, if we were facing those issues), I’m overwhelmed.

My dad is a physician and is licensed in the U.K. though doesn’t practice only in the U.K. – my parents live in Europe, if you didn’t know (I grew up in the States).  My mom encouraged me to share the test results from Dr. Sher with him and after a lot of wavering I decided to do so.  Granted, he is NOT a fertility specialist but I trust my dad and his knowledge and he has access to A LOT of medical resources including my uncle who is a very well-known and respected OB/GYN in Europe (he delivers celebrities babies…people whose names if I posted them you would recognize but I won’t to maintain my anonymity and respect his privacy) that said, my uncle is just a OB/GYN and NOT a fertility specialist.

On a side note, I’ve tried to keep my dad out of the whole medical piece of our journey because I like to maintain a normal father/daughter relationship with him and not go down the path of the doctor dad and daughter – we’ve done it before and it isn’t fun.  He gets all technical and medical and is less supportive of my feelings and more distant doctor…

Anyway, my dad reviewed our test results and doesn’t see anything wrong with them.  Yes, I have elevated natural killer cells but he says that most people do as that is what helps fight illnesses like cancer – so you want to have them in your body….He believes that the treatments that Dr. Sher is recommending (along with IVF) are not clinically proven and have more potential harm to me and a potential fetus from the side effects than are worth the risk.  He sent me this article that helped explain his rationale: http://www.hfea.gov.uk/fertility-treatment-options-reproductive-immunology.html

Dad said that his recommendation is to go to the fertility specialist who has the highest success rates and not the one with the innovative treatments.  Dr. Sher’s treatments are still in a clinical trial phase (though there don’t appear to be any formal clinical trials that he could find) and have no proven positive outcome (primarily just anecdotal).  He says we should try IVF a few times before going to Dr. Sher – and by then, if we’re still not pregnant, we can do more research on intralipid treatments, etc.

As you might imagine, after reading this article and speaking with my dad, both MH and I are much more hesitant to move forward with Dr. Sher (thinking of him as more of a last resort).  I scheduled a consult with Oregon Reproductive Medicine in Portland for next week.  My mom who has been visiting friends and family around the U.S. for the past month is arriving early next week for a visit with us.  She and I might take a little road trip together to Portland (along with Winston, who MH and I pick up on Saturday!!!!).

I’m also going to give the Colorado Center for Reproductive Medicine a call (probably today) and see if I can schedule a phone consult with them as soon as possible.

So, I know several of you have gone to SIRM and have had positive experiences as well as good outcomes using Dr. Sher’s methods of treating NKCs.  I respect your experiences and I am definitely not taking his recommendations off of the table.  However, I’m leaning more to saving his recommendations for a last resort.  I think I want to try IVF but try it in either Portland or with CCRM.  The success rate for ORM in Portland for my age range is 50%.  The success rate for CCRM in Denver for my age range is 59%.  Both of those stats are pretty compelling.

To be fair, SIRM-LV, does not report their numbers to SART but they do to the CDC (as required by law).  Their numbers are much lower – I think 27% for my age range.  Granted Dr. Sher may accept more challenging cases…something to consider.  Dr. Sher gave me a 50-60% success rate within two IVF cycles.

I’ve taken all of the Seattle centers completely off the table – the success rates while good are not as high for my age range.  The only reason why we’d choose one in Seattle is for convenience and I think at this point we’re going for making our dream come true instead of convenience.

Oh, did I mention that we need to tell SIRM by Monday at the latest?  They said that they’ll allow me to wait until my period shows up (I said probably by Monday) and that they’ll squeeze me in – which could or could not be true – as the deadline is actually tomorrow to make a decision and put down my deposit.

That’s a lot – clearly I’m processing.  Sorry for the novel!  For those of you who have been there before me, what would you do?  Would you skip straight to what I’m considering our “last resort” – Dr. Sher with the risks that are mentioned in the article and by my dad?  Or, would you try plain old-fashioned IVF at a fertility center with great results?

*********************

Today is CD27.  Historically, I would get my period today.  Tomorrow, CD28, at the latest.  Because my body was so wacky this cycle (no positive OPK, no temp rise followed by broken thermometer), I don’t 100% sure know when or even if I ovulated though I think I did on CD 16 or 17, late for me, I don’t know when to expect my period.

What do you think – will by cycle be longer because I may have ovulated a little later than usual?  I don’t feel my body yet getting ready for it except for my usual extreme moodiness compounded by the stress of trying to make a decision about where to do IVF.  When should I expect it?  I don’t have a HPT at home, so there’s clearly no early testing for me!

*********************

Yesterday was day three gluten-free:

Breakfast: same boring breakfast – I need new breakfast ideas

Lunch: corn and peas heated up, chicken breast, potato chips (I finished the bag so no more chips for me!)

Dinner: pasta (GF brand that was surprisingly very tasty but needed to be cooked longer) with home-made sauce made by me; salad

Snacks: popcorn, peaches

 

Today’s day four gluten-free menu will be something like:

Breakfast: same old, same old – definitely need new breakfast ideas!

Lunch: don’t know – I’ll probably run over to Whole Foods, which is around the corner from our apartment and VERY dangerous 🙂

Dinner: roasted chicken breasts with sauteed spinach and garlic and corn

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15 thoughts on “Overwhelmed…what would you do?

  1. I am a silent follower of your blog, but thought I would chime in on this issue. I am just starting my first IVF now with SIRM in Central Illinois, and I have been diagnosed with elevated natural killer cells as well. I went back and forth about what to do with this diagnosis just as you are….and I probably won’t be able to shed much light on the situation for you because it is a very personal decision, but I thought I would share my story.:) I was so torn about whether to do the Intralipids because there ISN’T much evidence for immune issues or intralipids as treatment for elevated NKCs. I work in healthcare, so I am ALL ABOUT good research and HIGH QUALITY evidence/studies supporting treatments. Which may surprise you considering I have elected to go forth with SIRM and the Intralipids. My husband and I talked about it and I stressed about what to do and finally decided that while there isn’t GREAT evidence to support the treatment, preliminary studies look promising (http://www.goivf.com/docs/ivig_intralipid.pdf). I guess I think that if everyone refuses experimental treatments, no new treatments will ever be established. The other thing that convinced me was that there was NO evidence that I could find to show that the Intralipids would hurt me or the baby. Intralipids are pretty much just fat and soy, so it shouldn’t harm anything. That all being said, I TOTALLY get why your dad advises you to consider Dr. Sher as a last resort because he is looking out for you and doesn’t want you to have a treatment that hasn’t been thoroughly studied. And, honestly, if you have other good REs near you or are open to traveling to other clinics, I don’t necessarily blame you. I feel comfortable with my doctor and SIRM and decided to give the treatment a shot. I will say that I don’t always trust the SART success rates because, if you do a little investigative work, the clinics reporting don’t have to report on difficulty of cases and a number of other factors when reporting their stats….so while the numbers are helpful, I believe they deserve an *asterisk* until SART does a better job regulating the data. So, in conclusion, I doubt that was very helpful to you at all.:) But I thought I would just play a little devil’s advocate to help make you more confused.:) In all seriousness though, I am rooting for you and can’t wait to follow your journey to baby!:)

  2. I don’t know much about natural killer cells… maybe I should? But I typically ovulate around CD 16 or 17 and my period usually starts on day 30 or 31. Typically the luteal phase is 14 days so you should give it another couple days.

    As for breakfast ideas: Udi’s gluten free granola is delicious, I like the vanilla one with almonds. They have several flavors (you can get it at whole foods or order in bulk cheaper on amazon.com). For breakfast I usually do that, a fruit/veggie smoothie or a fried egg on Udi’s gluten free toast. Hope that helps! You’re doing great with your gluten free adventure!

  3. I don’t know what I would do if I were you. I’ve been debating a lot lately whether or not to get tested for autoimmune issues and if so what to do about that. It is such a confusing area of medicine and it doesn’t seem like there are any clear answers. Good luck with your decision.

  4. Hi – Just tuning into your blog. I certainly have no answers, as I don’t have a lot of experience (yet!) with researching immune disorders in relation to infertility. However, following two failed IVF attempts at a top local clinic I have done a lot of research on IVF clinic and DOR (which in my case is quite severe).

    At the end of the day, I decided to go with the clinic with the best stats and reputation. I don’t think this is a foolproof means of picking a clinic, but in the absence of perfect information I decided to utilize the best objective data out there – which in my mind are success stats. Also, because this is likely going to be my last cycle or two, I wanted to know that I had gone with the “best” clinic so that if (heaven forbid) these cycles should fail I would not have regrets (at least on the clinic front).

    My only advice to you is to do what you are already doing – consult with a number of places and choose carefully. I do think that finding the clinic and doctor that is the best fit for you is very important to your experience.

    I wish you luck with your decision. And incidentally, I grew up in Seattle and love it too – it’s a nice place to live!

  5. I have complete confidence that for some women, immune system dysfunction explains their infertility.

    I also have complete confidence that for me, treating my immune system has been the only thing that’s allowed me to get pregnant (even though ironically, my immune system had nothing to do with my two miscarriages).

    Intralipids are typically used instead of IViG because Intralipids don’t have side effects, and aren’t a blood based product, so remove the related risks. They don’t work for everyone, so some women end up using IViG, but I don’t know of any clinic that starts with it.

    Steroids are commonly used in clinics in the US, even if the clinic doesn’t believe in RI. E.g. I’m pretty sure CCRM uses prednisone or dexamethasone, but doesn’t treat elevated NK cells or TH1:TH2 issues.

    So, given you’re traveling from Seattle, I would choose based on who you think has the best chance of getting you a baby. I wouldn’t ‘save’ Dr. Sher for a later attempt – if he’s the guy you’d go to after a failed IVF, why wouldn’t you go to him now?

    CCRM is bleeding edge on lots of stuff too, btw – they do things that aren’t accepted at other clinics (embryo glue comes to mind) – they just don’t do the immunology stuff.

    And for what it’s worth, Dr. Sher wasn’t the right doctor for me, so I’m not pushing him because I think he’s the end-all-and-be-all of doctors. But if you’ve identified immune system issues, I think treating them is wise.

  6. So I am nowhere near as knowledgeable on this stuff as most of the other people commenting, but I wonder what the downsides would be to switching to Dr. Sher if one or two cycles at a closer clinic fail (which I really hope doesn’t happen). I am sure that they are really full and do really need to know soon about whether you will commit to the December cycle, but it sounds to me like they are doing a bit of a high-pressure sale, which I don’t like. I have heard other clinics are like that too. I also get that of course you want a baby ASAP, and that they longer you wait the more your chances go down (to some degree) but I also know that traveling and being away from your husband for that long is an issue……..That’s just my two cents, but I can really see a case either way……these are hard choices!!

    • oh an I also get, of course, that having to do more cycles has a huge financial implication too—-should have said that. But I just don’t think making a decision based on pressure is good. You could always sign up for the January cycle if you don’t like your consults at other places, right?

  7. Girl, you’re so lucky to have someone you trust give you a professional opinion. I am glad you are choosing a clinic based on success rates, it is truly what counts.

  8. So glad to hear you don’t have alloimmune issues! Phew! That’s a relief. I am really starting to wonder how much truth there is to Dr. Sher’s science?! I am really not sure because other docs don’t believe in his research. It’s very confusing to me. I’ve heard wonderful things about CCRM, as well as SIRM. I think you could be succesful without intralipids.
    Good luck with everything!

  9. Not to sway you one way or another-but if I lived on the west coast-I would be cycling at CCRM in Denver-without a doubt. Now granted I dont have elevated NKA’s-but for sure you can’t go wrong with Denver.

    One of the things I did while hunting out a new RE rather than looking at just stats-was to base my choice completely on the ovarian stimulation protocol and support drugs the RE was going to prescribe for my IVF–at this stage in the game I knew what hadnt worked, and what things I wanted to see and especially what drugs I wanted. I feel confident that it is the mix of drugs and timing that you are on taking them that directly impacts your egg quality-and then from there make sure you are going to a place that does many cycles each year-by default the embryologists have far more hands on experience with growing, and biopsying which means less chance of embryo damage.

    I do follow a few women who incidentally seek intralipid therapy through other RE’s AND cycle at CCRM in Denver-because like many places CCRM feels there is no benefit from this treatment-BUT CCRM will work with you if you are at your wits end and are willing to undergo those infusions just to say you tried everything!

    Good luck 🙂

  10. I’ve just started this journey, but I’m a medical professional in a different discipline. I found myself latching on to the latest and greatest experimental treatments and then I realized that I don’t typically offer those things to my patients. I offer them what has been proven to work first and then if that doesn’t work, we can deviate from the plan. Sometimes the tried and true will work in cases we don’t expect it to work in, so it’s better to avoid the risk and try what’s proven (and by proven I mean peer reviewed journal kind of proven – not “it worked for my friend’s, cousin’s, sister-in-law” kind of proven) and safer first, in my opinion. Since the clinic with the experimental procedures has a lower success rate (I agree – probably takes more challenging cases), I’d say start with regular IVF in a clinic with a proven track record. Less risk and it might just happen. If that doesn’t work, move on. But that’s just my two cents. You have to do what you are most comfortable with.

    (Here from ICLW)

  11. Thanks for stopping by my blog earlier. I wish I could give you some advice on which clinic to cycle with next, but since I have absolutely no experience in choosing and IVF clinic, I will only say go with your gut. As far as immunology is concerned, I know it can be really scary and nerve wracking to try to navigate through such a new field of medicine. For myself, I learned about immunology after my second miscarriage, but it took 3 more miscarriages before I was at the point where the possible benefits began to outweigh my concerns. Sometimes I wish I’d looked into it sooner, but I’m also glad to have ruled out other possibilities first.

    The other thing I learned is that there are huge differenced between doctors who offer immunology testing, in terms of what they test for, what they treat, and what treatments they offer. I ended up with an RI center that only does immunology, but I almost went with a different doctor, until I found out that he offers a different, more temporary, treatment for one of my key issues. I decided to go with the center that recommends the more long lasting treatment first, and then, if that doesn’t work, I’ll contact this other doctor, because he does offer some even more cutting edge treatments than the center I’m currently working with. What I’m trying to say is that I completely understand your desire to give IVF a chance on its own, while keeping Dr. Sher’s immune protocols in mind as a next (or last) step.

    As to your question about gluten free breakfasts, the internet is a great tool for that. Search [your favorite gluten containing breakfast item] gluten-free. For example, if you search for gluten-free pancakes, you’ll come up with lots of recipe ideas. Or gluten-free breakfast cereal. Or gluten-free bread. There are a lot of gluten-free pre-prepared items out there, and there are also some great cookbooks for the culinarily inclined. My favorites so far are “The Whole Foods Allergy Cookbook” by Cybele Pascal and “The Gluten-Free Almond Flour Cookbook” by Elana Amsterdam.

    Good luck with everything and happy ICLW!

  12. My mom’s an ob/gyn, and I had the same hesitance you expressed about sharing with her, so it was four years before I did. Now that I have, I do want to lend her opinions maybe a little more weight than I should, because she knows her stuff, and she cares about me. If I were in your situation, I would probably compromise, and try at least one cycle elsewhere before going to the ‘last resort.’ I do agree that it seems like you’re getting too much pressure from Dr Sher’s clinic, which is kinda inconsiderate of them, I mean, do they get many patients who aren’t pretty stressed out about the reason they’re there anyway?

    Good luck. I know you’ll make a decision that works for you.

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