First, I just want to say thank you to everyone for your support on my last post. Has been a rough few weeks (months, years?), and hearing it from those that understand helps the healing so much. I feel like I've written a million times myself "I'm sorry, this sucks" but it does the job, eh?
So I wanted to back track and share the story of visiting the immunology doctor, let's call her Dr. IM. (I know, so clever, but I'm too conflicted to decide on a better nickname - Dr. Doom? Dr. Savior? Dr. Quack? Dr. IMBS?) We had our awkward first visit in early November which I talked about here, and then went back in December to hear test results and recommendations.
Basically, she told me I gots the Killer cells and the Motherf*cker. Oh, you want medical terms? In case anyone is interested in the details, here are some verbatim highlights from the written report they gave us...
NK Assay
Natural killer cell levels and cytotoxicity have been reported to predict a pregnancy outcome. The NK assay demonstrates elevated CD56+ natural killer cells [my result 17, normal range 2-12] with relatively elevated NK killing capacity by flow cytometric analysis.
B lymphocytes were measured by flow cytometric immunophenote study. Patient has normal CD19+ B cells with elevated CD5+ B-1 cells. These CD5+ B-1 cells are capable of producing autoantibodies that damage the placenta and decrease maternal to fetal blood flow.
TH1/TH2 Cytokine
T lymphocytes were investigated based on their cytokine producing capabilities. Patient has increased T helper 1, inflammatory immune responses. T Helper 1/T Helper 2 cytokine ratio reflects the ratio between two opposing T Helper immune responses. An elevated ratio reflects the dominance of TH-1 cells, which are cytotoxic and pro-inflammatory; as against the TH-2 cells which are important for implantation and pregnancy.
Thrombophilia
Patient is heterozygous positive (1 copy) for MTHFR 677T mutation, which may be associated with mild to moderately elevated plasma homocysteine levels. Such patients are at risk for atherosclerosis and thromboembolism; pregnancy wastage [WTF???], implantation failure, fetal neural tube defects, [and a bunch more shit].
Dr. IM's basic theory is that I'm having an inflammatory response to pregnancy, and with each pregnancy this has gotten more heightened. This inflammation is also wreaking havoc on my ovaries, causing their premature failure. Awesome. Treatment recommendations are to take Met.anx (which is basically a vitamin with a more absorbable form of folic acid along with vitamins B6 and B12 to address the MTHFR), and start 10mg pred.nisone (a steroid to address the inflammation).
I left both of our visits in tears. The idea that my body is rejecting each pregnancy and is on an accelerating downward spiral is sickening and doesn't exactly help my anxiety of trying to get pregnant again or get me too excited about alternatives like donor egg. My body will kill 'em all, so she says. But her description of what was happening in my body fit our history perfectly, seemed to give us an explanation, and even more seductively, she claimed she could help and change our outcome.
My husband jumped right on board, but some part of me remains skeptical. I don't like that these theories are considered "controversial" and not accepted by much of the medical community. I don't get a great vibe from the grumpy staff and tired office decor. I was downright pissed off by the reaction I got when she wanted us to start the pred.nisone right away with our IVF cycle, and I pushed back that I wanted to check with the Sunshine Clinic first --- I swear her and her assistant looked at me like I had grown a second head. Absolute silence and a dead stare, like no one had ever said "no" before. (Sunshine Clinic nixed it, by the way, since I was on another steroid, dexameth.asone, but said that they might consider it for the then presumed future transfer.) But on the other hand, I know that there are success stories out there, including a good friend of mine from my IRL support group.
So as we start a few cycles of trying on our own, I'm conflicted. I actually started taking the met.anx and pred.nisone a few days ago, but haven't called Dr. IM's office to tell them yet, even though I'm supposed to get a blood test 2 weeks into it. I figure the extra vitamins can't hurt, but I'm leery of the steroid, which has its own risks and side effects if I don't truly need it.
Will be pondering this one, ladies. Anyone out there got experience with it?
I don't have any experience with this, but I think you're smart to ask questions, even if Dr. Whatsherface doesn't like it. It's your body. I do hope you find something that works, though. Maybe this will be it.
ReplyDeleteI think it's good that you're being skeptical and not just following along with everything everyone tells you, and I also think it's wise that you are giving this path of treatment a try.
ReplyDeleteHowever, I do think you may want to look into finding another clinic that deals with immunology that won't stink eye your decisions. As controversial as some of this stuff is, I also know several success stories, so it may be worthwhile to seek out someone with whom you have better chemistry.
In terms of success stories, there's chon - who had a bunch of failed IVF's, and a loss and then got diagnosed with NK cells. She is now about as far along as I am. Here's her blog if you don't know it: http://mypathtoinsanityandbeyond.blogspot.com/
I'm in touch with her via email too, so drop me a line if you want to contact her directly, she may be able to give you some info, though I admit I don't remember off the top of my head what her treatment path was.
Hang in there! Huge hugs.
I'm in about the same boat, in getting started on a new plan after a diagnosis of mild lupus. I also have a thrombophilia (Pro C deficient) and for the last year and a half, it get brushed off as being connected to my IF and RPL issues, and I got bounced from Dr to Dr. Finally, I have a Dr. who is being proactive in my treatment - an auto immne disease Rx starting now, adding Prednisone if I get pregnant again, along with heparin injections. But these are all things I was hoping would be suggested, and wanted to try. So I agree with the above comment, that you shouldn't do anything you're not comfortable with. You have to be your own Dr. to an extent sometimes, and push for what you want, or don't want, in terms of your care. I hope that you and your Dr. can get a plan that you're both happy with, and will work for you!
ReplyDeleteI can't believe you are just finding out about the MTHFR. I have 3 friends so far who have had successful, healthy pregnancies with this same doctor you are talking about. One after 4 m/c's, another after 5 m/c at the age of 39 and now on her 2nd pregnancy at 41 (25weeks), one friend who is 38 weeks after 13 years of IF -41 yrs old (one m/c) and me, a natural pregnancy at 41 after 2 m/c's. These women all had natural pregnancies. My son was born in October- very healthy,except for some blood sugar problems on acct of my PCOS- as well as all the other children. The protocol works. Steroids kind of suck to take, but they help calm down the wacky immune response to pregnancy. Have you checked out the Reproductive Immunology Yahoo Health support group?? (I'm not trying to talk you into it but I truly believe you should give it a shot- what have you got to lose?) Have you read "Is your body baby friendly?" by Dr. Beers? And I'm sorry the office & staff experience is not what you may have been expecting.
ReplyDeleteI hope you find what works for you! Best wishes to you!
Ya know...My RE pish poshes many theories like those above and it irriates me. I think, if a group of expert geniuses analyzed my infertility, they could find the reason, and cure. For instance, the Motherfucker...All my genetic tests were perfect, except for that one...and she says there is no reason to worry about that. But implantation failure? Yeah. That'd make a whole lotta sense why I ovulate, but have never been pregnant, even with IVF.
ReplyDeleteI'm glad I'm not the only one who thinks MTHFR sounds like Motherfucker. :)
Good luck with the natural cycles. I have done two after my IVF, and it has been an absolute relief. Of course they haven't been positive pregnancy cycles, but it feels nice to have AF, track a somewhat normal schedule, not be on drugs and feel some hope that my body will work this out on it's own. For some reason, I have a feeling that the natural cycles are going to work for you eventually. Just to prove all those MTHFR's wrong!
I cycled at SIRM I'm Las Vegas where they are all about infertility and the immune connection. They are firm believers that elevated natural killer cells, as defined by the assay target test, causing RPL. They treat with steriods and intralipid infusion. Supposedly it helps lower the NK activity prior to the embryos implanting. Have you looked into alloimmune causes for the elevated natural killer cells? There is quite a bit of info on SIRMs website.
ReplyDeleteBest wishes!
Our immunology doc also diagnosed us with elevated Natural Killer Cells. And indeed my body's immune system too is killing our babies. It brings me to tears to think about it.
ReplyDeleteI am conflicted as well doing such unproven tests and treatments. Based on your description, I'd almost guess we were going to the same clinic- grumpy staff, check! tired old office, check!
My evidence for success is purely isolated cases of people I've met who said it works, not very scientific at all. I've just run out of other things to try at this point honestly so I am trying to just suck it up, give it a try and move ahead fingers crossed.
I took 2.5 mg prednisone starting at the beginning of my clomid cycle, though I wouldn't swear that it was that drug that did the sticking-trick (19w1d today) - probably a combination of that, having been on metformin, baby aspirin, and a vitamin B complex for six plus months, starting the heparin and prometrium right away on a positive hpt, etc, etc. There was a lack of communication between the RE, OB, and peri that had me on it until almost 15 weeks or so. Part of me wishes I'd discontinued it sooner, but I was still nervous to stop it, even though it was a tiny dose. Sorry if this is irrelevant since I didn't officially go the immunology route - was just lucky that my RE, though skeptical of the full immunology gamut, was willing to throw every weapon in the arsenal at the RPL even though I never tested positive for clotting factors, etc. I may not even really need the heparin at this point, but I'd rather have an unnecessarily bruised belly than clot anxiety (not that I've stopped worrying, of course). Thankfully the peri is understanding of that and my OB follows anything she says is okay.
ReplyDeleteMy journey is FINALLY over but I too know what this whole RPL journey is like. I was ready to try anything to stay pregnant. I get where you are coming from being nervous about trying things/not trying things.
ReplyDeleteI had four miscarriages before I got pregnant with my daughter and carried her successfully. I had three more miscarriages after her, the last one at 20 weeks last february. I was ready to take the immunology route but had already been on everything they suggeted except the prednisone and itralipids. Both my RE and Peri were very skeptical matter of fact the RE did a lot of trash talking about it. The peri wasn't happy about it but said they would do it in their office if they received the protocol for it. I think they were as desperate as I was.
I successfully delivered twin boys in December 2011 at 35w6d. I know it had to due with all the things that i was on but I never did end up doing the intralipids or prednisone.
I hope you find an answer soon. I know how heartbreaking and fustrating it is.