Frustrated with my doctors

I'm hoping that someone can help me sort out all of the conflicting advice that I am getting from my various doctors. Just to give you a little history, I had 4 early miscarriages before getting pregnant with the twins and before they figured out that I have something called MTHFR, which is a genetic condition that you inherit from one of both parents (in my case both since I have two copies) and causes you not to properly process B vitamins and can cause blood clotting issues. So, I'm on megadoses of B vitamins, baby aspirin and a blood thinner shot called Lovenox. The good news is it has worked well so far. The bad news is, you can't have an epidural or C section within 24 hours of taking a Lovenox shot (which I take once a day). Most people switch to Heparin at 34 or 35 week (with one baby) because it only stays in your system 12 hours and can be reversed if you need an epidural or C section.

I see my regular OB as well as a perinatalogist. My RE (who diagnosed the MTHFR), my regular OB and my first perinatalogist (I had to switch due to scheduling issues) all said I needed to stay on blood thinners the entire time. My new perinatalogist has an old school way of thinking (which from my research has been disproven) that I don't really need the blood thinners after the first trimester. This is not a risk I am willing to take--I've made it this far and the shots aren't that bad and I would never forgive myself if something happened just because I didn't want to take a shot.

I had PTL between 30 and 31 weeks and ended up in the hospital overnight and got the steroid shots and terbutaline. I've been on bedrest since then and everything has been OK but I could obviously have them sooner and I really want an epidural! I went to see my new perinatalogist on TU at 33 weeks and she says I can just go off the shots but if I insist, she will switch me at 35 weeks to the Heparin. My OB had warned me about the risk of blood clots while on bedrest so I asked her about this and she acted like I was crazy. She originally said I could go off bedrest at 34 weeks (on Monday) and my OB said 35, so I am left to wonder.

Fast forward to my OB appt. today with the only other doctor in the rotation I haven't seen. And, he tells me that not only does bedrest do no good but that it is very risky for me because I could get a blood clot and I absolutely need to be on the blood thinners! I'm leaning towards taking myself off bedrest on Monday at 34 weeks like my high risk doctor originally said but I'm at a loss at all of the differing opinions (and egos if you ask any questions). Any thoughts on how to get an answer on the blood thinners and bedrest? Also, any thoughts on how to get all of the doctors to talk and come to a consensus on receommendations? I've now gotten everything from you might have to stay in the hospital on bedrest until you deliver (at a little over 30 weeks) to you don't need to be on bedrest. I'm so frustrated with all of them!

 

Wow, that is a whole lot of information you are getting there. :wacko: I'm sorry you have to deal with so much conflicting advice. :hug:

Is there any way they can all call each other and have a conference call? I think it would be worth it if it could help you and your babies. :hug:

Good luck!

 

i also got conflicting information from my OBGYN and my perinatal specialist. the decision is yours, but i finally decided that the perinatal specialist spends his entire career dealing with high-risk pregnancies and therefore has a body of expertise that the OBGYN doesn't necessarily have. the OBGYN is an expert as well, but more of a generalist than a perinatal specialist.

then again, the perinatal specialist's job is the health of the babies. the OBGYN may have a better overarching view of your health as a total situation.

i realize this doesn't tell you who to listen to, but only you can make that decision. you've met your doctors and gotten a feel for their concerns and areas of focus. who do you feel has a greater expertise and perspective on this? blood clots are really no joke, they aren't just crying wolf if they're concerned. what matters is who you feel more comfortable with making a call like that.

 

Ugh! Unfortunately, you are learning first hand the conflicting views and opinions related to MTHFR among medical professionals. I was diagnosed with MTHFR C677 hetero and Factor 13 DNA homo after two early losses. While pregnant with my twins, I was on Folgard (a prescription pill containing folic acid, B6, and B12...you're on extra folic acid, too, right?!?), 81mg aspirin, and Lovenox. I was switched to Heparin at 34 weeks. I was also put back on Lovenox after delivery for 6 weeks.

I am in a yahoo group (MTHFRPG) that was a wonderful, wonderful resource for me while pregnant. I not only learned about different treatments and protocols, but also that MTHFR is a relatively new diagnosis in the world of RPL, and that you really have to advocate for yourself. You will probably not get the different docs to give you a "right" or "wrong" answer, and I'm guessing even if they consult with each other, they may not come to a consensus on your treatment. You will have to decide for yourself, unfortunately. For me, I would err on the side of caution...I would go with the doc who says to continue to with the Heparin until the end, and would stick with the bedrest for as long as I could.

The majority of the women in my Yahoo group are on the injectable anticoagulants until delivery, and almost all switch to Heparin. I took my last Heparin shot about 36 hours before my c-section (Baby A was breech), and stopped the aspirin 5 days prior (at my doctor's order). If they will give you the Heparin if you want it, I would take it. I HATE shots, but it was SO worth it to me to come out on the other side with two healthy babies. Taking the Heparin until you deliver will not hurt you or the babies. I would be surprised if they didn't want you on Heparin (vs. Lovenox) near delivery because your risk of needing a c-section (therefore needing anesthesia that is more difficult with Lovenox) and having increased bleeding at delivery is higher with twins.


I was also on bedrest (for 10 weeks), but was told I would alright as far as blood clots are concerned due to the "cocktail" of medications I was on. I did not have any issues. I saw a PT when I was put on bedrest and given exercises I could do from the couch/bed to keep things working/moving, and was given tedhose (which I never wore because I couldn't get them on myself ).

I was put on bedrest (and got the steroid shots) at 27 weeks, and delivered via scheduled c-section at 37 weeks. Every day, every week you can keep those babies in there means a few less days in the NICU, so I would really think long and hard about taking yourself off bedrest at this point. I was told I could "move around a little more" after 36 weeks. We delivered at 37 weeks due to pregnancy induced hypertension, and I was SO thankful my LOs stayed out of the NICU and only had minor feeding issues (didn't want to wake up to eat!) due to being born 3 weeks early.


I know this is still no real answer, but know you're not alone in getting conflicting recommendations from doctors on treatment of MTHFR. You might want to consider joining the MTHFR group, it is a great resource! I hope this was at least helpful!

 

QUOTE(Adrianna @ Jun 25 2009, 09:04 PM) [snapback]1369127[/snapback]
Ugh! Unfortunately, you are learning first hand the conflicting views and opinions related to MTHFR among medical professionals. I was diagnosed with MTHFR C677 hetero and Factor 13 DNA homo after two early losses. While pregnant with my twins, I was on Folgard (a prescription pill containing folic acid, B6, and B12...you're on extra folic acid, too, right?!?), 81mg aspirin, and Lovenox. I was switched to Heparin at 34 weeks. I was also put back on Lovenox after delivery for 6 weeks.

I am in a yahoo group (MTHFRPG) that was a wonderful, wonderful resource for me while pregnant. I not only learned about different treatments and protocols, but also that MTHFR is a relatively new diagnosis in the world of RPL, and that you really have to advocate for yourself. You will probably not get the different docs to give you a "right" or "wrong" answer, and I'm guessing even if they consult with each other, they may not come to a consensus on your treatment. You will have to decide for yourself, unfortunately. For me, I would err on the side of caution...I would go with the doc who says to continue to with the Heparin until the end, and would stick with the bedrest for as long as I could.

The majority of the women in my Yahoo group are on the injectable anticoagulants until delivery, and almost all switch to Heparin. I took my last Heparin shot about 36 hours before my c-section (Baby A was breech), and stopped the aspirin 5 days prior (at my doctor's order). If they will give you the Heparin if you want it, I would take it. I HATE shots, but it was SO worth it to me to come out on the other side with two healthy babies. Taking the Heparin until you deliver will not hurt you or the babies. I would be surprised if they didn't want you on Heparin (vs. Lovenox) near delivery because your risk of needing a c-section (therefore needing anesthesia that is more difficult with Lovenox) and having increased bleeding at delivery is higher with twins.
I was also on bedrest (for 10 weeks), but was told I would alright as far as blood clots are concerned due to the "cocktail" of medications I was on. I did not have any issues. I saw a PT when I was put on bedrest and given exercises I could do from the couch/bed to keep things working/moving, and was given tedhose (which I never wore because I couldn't get them on myself ).

I was put on bedrest (and got the steroid shots) at 27 weeks, and delivered via scheduled c-section at 37 weeks. Every day, every week you can keep those babies in there means a few less days in the NICU, so I would really think long and hard about taking yourself off bedrest at this point. I was told I could "move around a little more" after 36 weeks. We delivered at 37 weeks due to pregnancy induced hypertension, and I was SO thankful my LOs stayed out of the NICU and only had minor feeding issues (didn't want to wake up to eat!) due to being born 3 weeks early.
I know this is still no real answer, but know you're not alone in getting conflicting recommendations from doctors on treatment of MTHFR. You might want to consider joining the MTHFR group, it is a great resource! I hope this was at least helpful!


Thank you so much for your reply! I have definitely learned that there are SO many opinions on MTHFR and that no one really seems to know. I definitely want to err on the side of caution and continue the shots but I was in the hospital recently for PTL, so I think they should take that into consideration. My high risk doctor, because she doesn't think I need them at all (without any blood tests or anything, just because that is what she thinks) doesn't want to switch me until 35 weeks. The way I feel now, I have serious doubts I will make it that far. Fortunately, both of my babies are head down so they want me to try to deliver but I really want an epidural and am worried about bleeding issues if I end up with a C section. I am definitely going to check out that forum.

 

I am 31 weeks and on lovenox for Factor V Leiden (another condition that heightens your risk of clots). My OBGYN sent me to a hematologist who was very wishy-washy about whether I needed shots. My OBGYN was pushing it and after talking to her, the hematologist agreed. My thought is - why NOT take the shots? With the heparin, you're counteracting the increased risk of the bed rest. And the hematologist told me that the negative effects of the blood thinners are very low - increased risk of bleeding but in the event of labor you will be at the hospital with access to medical care. And ideally the thinners will be out of your system before then. Esp once you switch to Heparin and it can be better controlled. The major downside to the shots is the inconvenience/pain/expense of the shots. And I don't know about your pregnancy, but with mine, everything is an inconvenience/pain/expense so what's one more to add to the list if it keeps me and my babies healthy.

Net is. I would vote - bedrest and Heparin.

Also just as an FYI (and for anyone else taking Lovenox reading this), my dr. told me that while i'm still on lovenox, if I even THINK that I might be going into labor, NOT to take the shot. It's much better to miss a dose or take it late than to risk not being able to get an epidural, etc.

There's my $.02 worth!

 

QUOTE(Barb2009 @ Jun 26 2009, 02:45 PM) [snapback]1370204[/snapback]
Also just as an FYI (and for anyone else taking Lovenox reading this), my dr. told me that while i'm still on lovenox, if I even THINK that I might be going into labor, NOT to take the shot. It's much better to miss a dose or take it late than to risk not being able to get an epidural, etc.



My doc said the same thing. If I was having contractions (which I often did), I was to wait on the Lovenox. A few times, I got sent to the OB ER for terbutaline, but then was told to take my Lovenox when I got home.