Multiple Loss Cysters - Page 2

SassyMKB · 04-18-2009, 07:25 PM

I'd love to join in. So sorry for everyone's losses.

I just got back my b/w from the hematologist and he didn't really find anything. Said I had slightly elevated homocystine, but not enough to put me on lovenox. He wants me to come back for more tests and I'm annoyed that whatever he wants to test me for now that he didn't test for the first time. I had a hysteroscopy this week and they found a small polyp and a small area of scar tissue both of which they think had nothing to do with the m/cs.

Like the rest of you, I'm terrified to TTC again. I can't imagine going back to TTC without any answers. Both pregnancies were from Femara and we thought that moving to IVF would let us at least look at the embryos. My RE isn't against IVF, but said that we shouldn't be looking to it to reduce our chances of m/c. He said he's seen high grade embryos m/c and low grade embryos result in healthy babies, so it doesn't decrease our chances. I do plan on talking to him about prophylactic Lovenox again but otherwise, I just keep thinking "Now what?" I'm just grouchy all the time....

JustinsMama · 04-19-2009, 01:40 AM

Melissa-Welcome, its good to hear from you. I've been wondering how you were doing. Hmmm, I'm no doctor of course, but it sounds like in your case since they found the elevated homocystine levels that maybe pushing for the lovenox might help? I really want to try lovenox next time myself, and I actually had a new RE recommended to me by a woman on a RPL message board that uses lovenox to treat unexplained recurrent miscarriage. She had success with it for unexplained loss. I have an appointment with him Friday. I keep thinking mine might be autoimmunity, and I know lovenox is used for treatment of autoimmune issues of RPL, among other things. I pretty much want to do anything and everything I can that might prevent m/c next time around. But I can't bring myself to even try again without doing something, anything that might help, you know? I've wondered if maybe IVF could help me too, but I have no insurance coverage for IVF and I'm afraid I would spend $12K just to miscarry again. ((hugs)) I hope you are able to get some clear answers.

SassyMKB · 04-19-2009, 11:45 AM

Stacy - Sweet of you to be thinking of me. I haven't really been on the boards lately b/c I've been trying to live life without TTC for a while but this week's results are reeling me back in and making me realize we need to decide what to do next. I feel EXACTLY the same way you do about trying again, IVF and Lovenox. I need to find out more about the pros and cons of taking it. I'll be going back to the hematologist to find out just how high my levels are (he said it wasn't enough to warrant Lovenox, but I don't necessarily trust that). Something has to be different this time around!

JustinsMama · 04-19-2009, 12:20 PM

Melissa-I know exactly what you mean about needing a break from all this TTC madness. We had our family Disney tripped planned before the m/c, so I was trying to focus on that be excited about that and put TTC and m/c out of my mind. The day after we got back I had an appointment with my RE to talk about TTC again, so that sort of signified the end of my break. And I wasn't very happy with how that appointment went. He didn't want to change my protocol at all, the only thing he wanted to do differently was watch my thyroid hormone levels more closely. (Which he should have done last time anyway, grrrr.) So after that appointment I decided to bite the bullet and make an appointment for a second opinion with this new RE that was recommended to me. I'm on BCP until I'm ready to TTC again.

I was reading up about elevated homocystine levels and it sounds like taking high levels of folic acid and B vitamin can help. (That's something easy you can do next time around.) And sometimes heparin, which it sounds like you want to push for. Sometimes I feel like these doctors want to use trial and error to treat RPL, and when you're dealing with RPL, error means another m/c. I wish they would just aggresively do everything that might help, you know? Good luck.

wtng4amiracle · 04-19-2009, 03:29 PM

Can I join you, too? I am currently going through my 3rd loss--D&C probably this week. We had blood drawn last Friday for intial genetic testing. We have been TTC for 7 years, and I am not sure how much more I can handle.....

Anyone know what the Chromosome bloodwork can tell?

momof2angels · 04-19-2009, 04:06 PM

I would love to join you. I have had 4 m/c and 1 preterm that passed 10 mins after he was born. My last m/c of the 4 was in 2006. Been ttc since.

MiaJolie · 04-19-2009, 04:12 PM

Hi can I join too?

I started miscarrying naturally today, I was 5 weeks. HCG was low - rising but not doubling. This is my 2nd m/c TTC#2. DD is 3. I have an US tomorrow so they can try to see what happened. I suspect Blighted Ovuum.

What is sad is that I am not that sad, because I never let myself get too excited. I will never be excited about a BFp again. It would just scare me.

Thanks, just needed to vent for a bit.

SassyMKB · 04-19-2009, 08:56 PM

Welcome to the new ladies. So sorry for your losses.

Stacy - I just read that too about folic acid and B12 (and also B6). I'll be happy to take a ton more of those! I agree about the trial and error - I hate being their guinea pigs. I truly believe there's a reason for these RPLs for me - especially since both occurred after a hb. I think they just don't have the means to find it yet. My RE wanted to put me on BCP but I said no - I didn't want to adjust to yet another hormone change. After the m/c I started taking vitex at the advice of my acupuncturist and surprisingly I got my AF on my own this time without needing provera. Ironic that I may have found what could regulate me just as I've been coming to terms with the fact that I've moved from being someone with a problem getting pregnant to someone with a problem staying pregnant. Still no idea what we're going to do next. What is your TTC plan?

MiaJolie - I know just what you mean. These m/cs have ruined any excitement about pregnancy for me too. It terrifies me to even think of TTCing again.

JustinsMama · 04-19-2009, 09:43 PM

Cheri-Welcome. The chromosome bloodwork can tell if you are a carrier of any chromosomal abnormalities. If you are a carrier, it means you are at high risk for passing it on to your children but I believe it can sometimes be overcome with IVF with preimplantation genetic diagnosis.

momof2angels-Welcome, it sounds like you have been through a lot. ((hugs)) I hope you are able to find some answers.

MiaJolie-Welcome, I totally know where you are coming from. BFP's are no longer exciting for me, they are terrifying. It sad it has to be that way.

Melissa-That's interesting about the vitex, maybe I will have to try it. I totally know what you mean, when I was first dx'd with PCOS I was so depressed because I thought I would have a really difficult time getting pregnant because of it. And I've quickly learned the bigger problem is staying pregnant. And I honestly think that's almost worse! Like I mentioned earlier, I have this appointment with a new RE on Friday. He was recommended to me by some ladies on a RPL message board, they both had success with him after several m/c. And he apparently believes in lovenox for treating unexplained loss, which I really want to try. I was annoyed with my current RE for a few reasons, so I'm happy to get some new opinions and ideas. First of all, he knows I have a thyroid problem but never tested my thyroid after my BFP, only to find it had acted up after the m/c. So who knows if the pregnancy could have been saved if he had checked it. Then, he wanted a D&C with chromosomal testing AFTER I had been bleeding heavily for a week and half. So the chromosomal testing came out inconclusive since everything had passed by then. So I feel like I basically had a D&C for nothing. And then when I had my follow up appointment with him, I asked about the results of the chromosome testing, he told me they weren't in yet. Then the nurse tells me they were in, and that they were inconclusive. So I basically feel like I'm not getting the attention I need. Plus, he wasn't interested in changing the protocol that resulted in m/c. So I'm really hoping I like this new doctor. I'm getting my records, I'm hoping he can look over my RPL testing and tell me if I really have had EVERYTHING, or if there is anything that was left out. And then I'm really hoping he will let me try lovenox. I also read that selenium can help thyroid conditions so I started taking that. So that's my plan so far. What about you, what are your plans? Sorry this has gotten so long.

SassyMKB · 04-20-2009, 06:46 PM

Stacy - glad you are seeing another RE. I really believe we need to be our own health advocates and if we're unhappy with a doctor, we should find one we do like. Right now I have no idea what my plan is. I have to go back to the hematologist (who I don't like) to see what else he wants to test me for and why (plus find out why he didn't test for whatever it is the first time). Might just take my results and go to someone else. Then I want to talk to the RE about what we should do based on the results I already have. Plus the RE ran some chromosomal work on me and DH that I'm still waiting to hear the results. Like you, I'm leaning towards Lovenox but I know my RE wants to talk about the pros and cons of it with me before doing it (but I think if I want to do it, he will). Do you know of any negatives to taking it? Beyond that, I'm not sure if I'll do femara again or go to IVF - I'm still undecided. I'm terrified to try again and might just end up taking next month off. It's funny how after the last m/c, I counted the seconds until I could try again and this time I want more time. Look what fear does to us...

Hopeful09 · 04-21-2009, 11:41 AM

I am sorry for all your losses. Here is to wishing multiple BFPs and sticky beans to you all!!!

PCOSDC · 04-21-2009, 02:29 PM

Hi girls I'm back from my trip to see the RPL specialist. He was very nice and very caring. They took 15 vials of blood for all the tests. We already had our genetic testing done in January and the results are still not back. I'll get all my results on June 15th via telephone follow up. The doctor said he thinks we have a very good chance of success given my age and the fact that I made it so far last time.

PCOSDC · 04-21-2009, 04:28 PM

I wanted to post all the tests that were ordered for me in case some of you want to double chack what you've been tested for and what you haven't.

There were 3 panels: autoimmune panel, coagulation panel, and throbophilia panel. Each panel is broken down further:

Autoimmune Panel:
-anti-ds DNA
-anti-ss DNA
-anti-lymphocyte IgM
-anti-cardiolipin IgG
-anti-cardiolipin IgM

Coagulation Panel:
-Russel's Viper venom time
-Kaolin Cephalin Clotting time
-Partial thromboplatin time-lupus anticoagulant specific
-Dilute pro-throbin time

Full Throbophilia Panel:
Includes Antithrombin III Activity, Factor V Leiden, Homocysteine, Lupus Anticoagulant - DRVVT, Lupus Anticoagulant - Hexagonal Phase, Protein C Activity, Free Protein S Antigen, Factor VIIIC and Prothrombin Variant 20210A.

SassyMKB · 04-21-2009, 06:02 PM

Kristy - thanks for posting that list. Sounds like you found a great dr for your RPL testing. I'm not a big fan of my hematologist but I figure he just has to read some blood tests.

Not sure where my list fits into yours, but my acupuncture gave me the following to make sure I'm tested for:
Prolactin
Antilupus Antibodies
Thyroid peroxidase Antibodies
Thyroglobulin Antibodies
PT/PTT
Glucose (Fasting blood only)
Insulin
Prothrombin 20210
C reactive Protein
MTHFR gene
Factor V Leiden mutation
Protein S
Protein C
Antinuclear Antibodies
RPR
Rubella
Anticardiolipin Antibodies
Blood Type
TSH
FSH
HBAIC
DRVVT
Homocysteine
Serotonin
NK Killer Cell

I gave this list to my hematologist and asked if I was tested for all of these. He left me a message saying he tested for things on this list and things that weren't on this list, so I'm not 100% sure what I was and wasn't tested for. I'm seeing him again on Thursday (b/c 18 vials of blood wasn't enough for the first round!). Ugh..

Acajou73 · 04-22-2009, 06:39 AM

I'd like to join. I'm in the process of losing my 4th pregnancy.
I found out I was pregnant April 1st. But suspected a few days before that I was pregnant. It was unplanned. I was focusing on weight loss first. My last miscarriage was over 4.5 years ago. I went to the health center to get the heparin that was recommended after my 3rd loss. The doctor there decided that since I had lost weight, they should lower the dosage. I didn't question it. I was just so happy to be pregnant again. The doctor I saw yesterday that suspects that i'm miscarrying said that I was on too low a dosage for too long and that could be the cause of my miscarriage. I have another lab test scheduled for Monday and another ultrasound scheduled for tuesday to confirm a miscarriage. I'm devasted. I saw the heartbeat twice! I'm scared that i'll never give birth. I'm 35 years old now and am running out of time. I have decided that I will return to the US after this miscarriage is over (I live in Finland) and will try again with clomid and an RE.