I'm going to kick arse and take names later.
Met with my hemotologist this morning... and he basically said "well, some things are weird, but nothing jumps out at me." and pretty much sat there with his empathetic listening ears on with hint of sad face, and didn't suggest a damn thing.
(and this is a "very well known" doc who knows his chit)
My platelets were super high 2 weeks after my last D&C and 12 week pregnancy loss. NOW they're on the very low end of normal. My hemoglobin was really low after the D&C (makes sense) but the MCNC or something that supports that, was opposite of what it should be. I tested LOW for Protein S last year, and AGAIN last week. (this time I was on 40mg lovenox) but since the results were 71, and that lab's reference for normal is 70-200, he says it's fine. To which I said "OK, what if it was 69, THEN what would you do?" to which he replies "nothing, that's just about normal." Well, with all due respect, CLOSEEFFINENOUGH. DO SOMETHING !!!
He was even hesitant to double my "empiric" lovenox dose to 80mg (NOTHING with the size of 'me arse right now) b/c he says it's not medically warranted. To which this Mother Tiger lost her chit and said "I HAVE HAD 11 LOST PREGNANCIES! WHAT THE FRICK IS 'WARRANTED' AT THIS POINT? MY SANITY?"
::::crickets:::: I somehow talked him into doing the Xa test that measures if the lovenox is at the right level. Holding my breath there. (not) and repeating a couple lupus tests that I can, since IVIG will goof up most of the others right now. I tell him "Dude, I DO NOT BLEED." and he says "I know, that's weird."
ARE YOU KIDDING ME???? FIX IT!
So yeh. That's about all I know. Another dead end with no real answers. So here I sit, taking a rogue dose of lovenox, a WTF dose of steroids that are RUINING my quality of life (and the weight gain, OMG....) and going thru hell and back to do IVIG each month.
Seriously, Something's Gotta Give.
-------------------------------------
Q - I believe the estrace is adding to my hypercoagugability... anyone take PATCHES over PILLS, and why?
Q - would a standard massage being a bad idea, prior to a FET? I could have sworn there's something about "releasing toxins" in the body, and I'm worried that would louse things ups. Can't get da-runk, might as well get rubbed by a hot dude in white pants. lol. Or not?
Re: If ONE MORE DOC shrugs his shoulders at me...
how frustrating!!!
i'm in a similar situation as you--i have some health peculiarities that haven't fallen neatly into a the category of any known illness. some doctors admit that there's something wrong and they can't figure out what it is. others are obnoxious as fvck and pretend that if they don't know what's wrong, that must mean that NOTHING'S wrong. and it sucks. said doctors deserve to have their arses kicked by you.
have you looked into being referred to the mayo clinic? i was there at one point. it's not a perfect place, they might not have answers either, but it might be worth a shot if you can get in.
I'll happily roadtrip down to Mayo if I could find a doc that was seriously ready to FIND WTF WAS WRONG.... it's not that far.
BUT... there's really no TREATMENT STONE left unturned. The IVIG is the Mother Load of auto-immune stuff, and there's really nothing you can do about clotting stuff but lovenox. (and I'll get my OB to double the script for me, I don't care)
But at this point, I would REALLY love some answers just to be able to state "THIS IS WHAT I HAVE" and PICK A DIRECTION to treat.... I'm not kidding. These steroids BLOW. If I don't have a reason to be on them, for all thing holy, let's STOP THEM!
uughhh. sorry. Davez is being douchetastic (I don't blame him) and my besties can only take me whining so much. (sorry Al, lol) This all got old 2 yrs ago.
:-(
(on a positive note, Ava has sung "Lean on Me" Glee version, to me 5 times today. Having NO idea what she's singing about, but healing my broken spirit, none the less. Ah, that kid of mine....)
1) This bites the big one. I would be caaaa-razy.
2) My friend/neighbor is a massage therapist and I will ask her about the risk of toxins released into your system prior to a FET. I'm guessing you'll be ok, just the benefit of giving you 5 seconds of rest would be enough.
3)One tiny suggestion regarding Mayo- walk into their ER. It can take for-freaking-ever to get an appointment there, but walk right in to their ER and get treated. Just sayin'
4) Want me to get drunk for you? I'm a nice friend, so I'm offering.
Hit that, please. Then belch in 'me face. lol.
Feck! I was hoping this was the beginning of some answers for you.
Damn, I'm frustrated for you girl! And don't know what else to say but F^ck again!
Because we're fancy like that.
After 21 cycles, and severe MFI, we finally did it with IVF #1 w/ICSI! Nico arrived 12/3/08!!!
TTC for #2: IVF w/ICSI #2-4/17/10-BFN; IVF w/ICSI #3; 7/4/10-BFP!!! Beta #1- 96; Beta #2-528; Beta #3- 7371; 6w,5d-blited ovum=D&C
IUI #2 1/10/11-BFN; IUI #3 2/18/11-BFN
IVF #4 w/ICSI & PICSI ER 5/13/11, ET 5/1/118-BFP!! Natalee arrived on 1/23/12!!!!
Pregnancy Blog: Miracles Can Happen
Parenthood Blog: The Adventures of Nico & Natalee
I would LURVE to see what mine says. lol. "PITA" I'm sure.
How frustrating ( I realize that's a HUGE understatement)! I was really hoping you'd get some answers.
I did pills and the patch but both at a low dose, I know some do just the patch...worth a shot.
TTC #1- unexplained...lost left ovary 4/07 IUI #1 2/10/09-BFN IUI #2 3/5/09-BFN IVF # 1-BFP
TTC#2- FET 4/7/11 BFP, Natural mc 5/5/11 IVF#2 ER 9/13/11, ET 9/16/11, Beta #1 9/27/11 BFP 254 Beta #2 9/30/11 793 -Twins!
I don't know if you're open to this or if she would do any kind of phone consultation, but, I highly recommend Dr. xxxxxx. She's a maternal hematological specialist out of Cornell in NYC. She is actually based in either an OB/GYN or high risk office (I can't remember). I was recommended to her when I was at Cornell because I had some strange blood results (nothing as strange as yours!) and she ran some really weird tests and found what it was. One of the tests was so weird she actually had to call the lab and explain to them how to run it. She is incredible and I loved that she was that thorough!
LB - - I'm on it. You can DD the info if you want, I've got it. THANKS!
I don't know why I didn't think to give you her info sooner! That proverbial lightbulb just went off over my head tonight. Sorry!
Man, I got nothin'... I'm just so frickin' sorry for you. *I* am completely frustrated by all of this; I can't IMAGINE how you feel. WHERE is the real life House????
Guh. Wish I had a magic wand for ya, T. I really do. I'll do the closest thing I can and pray. (((hugs)))
*stares blankly at the screen*
I don't even know what to say. This has to be SO frustrating. I'm so sorry, T.