Multiple Loss Cysters

[JustinsMama]

Acajou-Welcome, I'm so sorry to hear about your losses. I hope increasing the heaparin gives you your healthy baby. ((hugs))

Kristy-Thanks for the helpful info. I'm currently trying to get my medical records from my RE, I will have to compare your list to what I've been tested for. That's great news that your doctor is optimistic you will have a successful pregnancy. I hope your RPL testing gives you some answers so you never have to go through this again.

Melissa-I know exactly what you mean about being excited to TTC last time, and wanting more time this time. I feel the same way. I actually could have started TTC this cycle with my old RE but decide to go on BCP and go for the second opinion instead. As far as Lovenox goes, all I know is that it can cause risk of bleeding and requires monitoring by a doctor. But I've heard so many success stories of women who used it after unexplained loss, I really want to try it. I'm willing to try anything at this point!

AFM-So my appointment with the new RE is Friday and my old RE is taking their time getting me my medical records. I'm getting really anxious. I filled out the form to get them released to me 2 weeks ago and haven't heard anything. So Monday I called them and reminded them that I needed them by Friday. So here it is Wed. and I still haven't heard anything. I swear, why does getting OUR OWN medical records have to be so difficult?

[PCOSDC]

I also forgot that my regular RE had tested me for a bunch of other stuff so I guess there are things missing from my list (things like glucose, thyroid stuff like that)

[SassyMKB]

Stacy - I've been doing some research on Lovenox and have also found it can cause strokes as well as paralysis from an epidural.... Not sure of the % though. I have no idea what the right thing to do is anymore....

My acupuncturist recommended the book "Is Your Body Baby Friendly" by Dr. Alan Beer http://www.babyfriendlybook.com/ It's for unexplained loss. I ordered it from Amazon but was also doing some digging on Dr. Beer's website and came across the motherload of information on http://health.groups.yahoo.com/group/immunologysupport/ Just thought I'd share

AFM - tomorrow it's back to the hematologist to review results and more tests done....

[Acajou73]

Justinsmom: Thank you, the heparin didn't seem to help this time (the increase came too late). I am still in limbo. I have to go Tuesday to confirm the miscarriage. No one is sure of anything yet.

[JustinsMama]

Melissa-I never read anything about lovenox causing strokes, I thought it prevented strokes since it stops the blood from clotting? But what do I know, I'm no doctor. I did read about the epidural/paralysis and I think what I've read is that most doctor's switch from lovenox to heparin when it gets close to delivery time. But again, I'm no doctor and may be completely wrong. I'm going to see what this new doctor I'm seeing tomorrow has to say about it. I'm still hoping he will be able to find something wrong, I hate having everything unexplained. Also, thanks for the info about the book, I may have to order it.

Acajou-((hugs)) I hope you are able to get some answers. Being in limbo is just the worst.

[PCOSDC]

Acajou: I'm so sorry to hear that the heparin wasn't helpful for you. Why do you think that was? Did you start it later?

Just curious.

[JustinsMama]

Hi ladies, I picked up my medical records for my appointment tomorrow. I was looking through them, and I'm not so sure I have been tested for everything. I asked on several occasions if I had been test for EVERYTHING, and they assured me I had. I see I've been tested for:
Rubella Immune Status
Lupus Anticoagulant
Fasting Glucose
Cardiolipin AB Screen
TSH (I've known since before I went to the RE that I had a thyroid problem and have been on synthroid for it)
Granted, my medical records are long and I don't fully understand all the medical jargon so I may be missing some things. I can't find anything about MTHFR, Factor V Leidan, or homocysteine which I wanted to be tested for. I hope this new RE I'm seeing tomorrow will be able to test for anything the old RE left out. And I hope he finds something we can treat!

[Acajou73]

I think it was the health center doctor's fault. She put me on .40mgs when I was supposed to be on .60mgs. She lowered it because I lost weight. When I started spotting, they asked about my dosage and said it was too low and upped it to .60mgs plus 81mgs baby aspirin. Then I started passing clots and bleeding heavily and the seccond doctor said that if it is a miscarriage it is probably because the dosage was too low for too long a time.

I started it the day after I got the positive test. The doctor at the health center told me to stay off aspirin. The doctors at the hospital told me that I should be on it. I was on the lower dosage for 12-13 days and have been on the higher for a little over a week.

Acajou: I'm so sorry to hear that the heparin wasn't helpful for you. Why do you think that was? Did you start it later?

Just curious.

[PCOSDC]

acajou: That is awful. I'm so sorry that you are suffering because of someone else's mistake.

[Acajou73]

I am kicking myself for not saying anything when she lowered it. I was just so happy to be pregnant again and relieved to be getting the medication. I thought that the pregnancy was safe since I got the meds even though it was a lower dosage

[my2babies9806]

Hi ladies. Mind if I join you? I've had 8 losses. 7 first trimester losses between 5-9 weeks and 1 second trimester loss at 24 weeks. I've had every test imaginable done with no results. Everything is normal. I was told that when there's no explanation for the m/c that it's called "recurrant pregnancy loss syndrome" or something like that. I find I don't get to excited over bfp's anymore, although I desperately want more kids. It's hard and scary and frustrating and depressing, but I WILL NOT give up. I'm sorry that we have all suffered so many losses. But I'm glad we all have each other to lean on and support.

[SassyMKB]

Acajou - I'm so sorry for what you are going through

My2babies - welcome. Your determination is inspiring.

AFM - looks like we might be on to some answers. Turns out I tested positive for one of the MTHFR genes along with elevated homocysteine levels. The hematologist is running more tests b/c it seems I'm in the "gray area" for treatment - homocysteine is only slightly elevated and the gene that mutated doesn't necessarily cause clots (not sure I'm buying that one). I feel so much better knowing we just might have found the problem! I'm scheduling an follow up with the RE to go over all of my results and decide what our plan of action is going to be.

[JustinsMama]

My2babies-Welcome, so sorry to hear about you losses.

Melissa-That's great that you are finally getting some answers. From what I understand MTHFR is treatable. I'm soooo hoping this new RE I'm seeing today can find something.

[PCOSDC]

Melissa: That sounds promising. I know I keep praying that something comes up positive so that we can treat it and be successful!

My2babies: WOW! I am so sorry for all of your losses. That is terrible. Do you mind if I ask when you had your children? Was it before your losses, after your losses or inbetween? Did you do anything different for those pregnancies?

[SassyMKB]

Stacy - good luck with the new RE! I did a bunch of reading up on MTHFR last night and the "definitely" treatable ones are the "homozygous C667T" or "compound heterozygous C667T AND A1298C" and of course I have neither of those. Plus, my homocysteine is elevated, but not by a lot so it doesn't necessarily warrant Lovenox (although I plan to investigate that further!). For now, the hematologist added a prescription Folic Acid and said that the B6/B12 I'm getting in my prenatal was enough (but I think I need an additional supplement - will talk to my RE). So I have sort of an answer, but not quite clear cut...