September 27, 2011

What To Do?

First of all - Libby, please know I'm thinking of you and hoping the transfer results in a positive outcome. I've tried to post a comment on your blog about a dozen times, but it just clears the comment without posting it after I submit it. Not sure what's wrong, because I've been able to comment on other blogs. For those of you who don't know Libby, please go wish her success with her recent transfer.

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I'm still unsure with regard to what to do about the progesterone situation.

The score: 4 doctors think my level is fine and doesn't require additional support, 1 suggests additional support for a week, and 1 potentially suggests additional support until 20 weeks. You would think that having 2/3rds of them solidly on one page would put my mind at ease, but no.

The 4 who think things are fine: Both of the perinatologists in the practice I go to, my RE, my RI.

The peri who isn't the one I see was the first to respond to my call over the weekend. She doesn't think I need additional progesterone support but said it would be fine for me to take 2 suppositories a day until Friday if it would make me feel better. My peri called about 5 minutes later. It was clear she was annoyed that I was calling her about something we've already discussed and was very blunt in saying she absolutely would not order progesterone for me nor would she order any tests to monitor my levels. (To her credit, she also did her very best to try to reassure me that everything looks perfect and that she doesn't see any reason for me to worry.)

I haven't had a chance to ask the nurse why my RE is fine with my level being below 20, because it came in a voicemail.

And really surprisingly, the RI's office says anything above 10 is fine at the end of the first trimester/start of the second, even though their website says immune patients should continue progesterone support until 16 weeks. 10? Seriously??

The 1 suggesting additional support for a week: The RE who was on-call for the clinic this weekend.

The surprise of this one is that the nurse had told me on Friday that there was no point in asking him what his recommendation was, because that particular RE requires all his patients to be off all progesterone support by 12 weeks, regardless of their levels, no exceptions. But then she decided to go ahead and ask him anyway on Saturday since my RE hadn't responded yet. And the one who never recommends supplementation past 12 weeks told her to have me continue taking a suppository until this Friday, which will be 14 weeks.

The 1 potentially suggesting additional support until 20 weeks: Another RI who I had consulted with last fall but decided not to work with because the additional treatment he recommends for some tough RPL cases is a drug I won't take. One of the risks of it is an increase in the likelihood of developing leukemia, and with my dad's and grandfather's history, I'm not going there.

But he has a forum on his website where you can post questions. And while he didn't directly answer my question about what he likes the level to be at the end of the first trimester or directly comment on my particular level, he did say that for women who have had low progesterone levels and a history of losses, he keeps them on supplementation until half way through.

If I was already his patient and he was already involved in managing some aspect of this pregnancy, I'd just go with his recommendation. But I'm not actually his patient (we only did a brief consult about a year ago), and I think it could potentially create an uncomfortable relationship with the peri if I bring in another doctor who will do what I want because she won't.

If she was an average ob at a typical practice, I would shrug off that concern and find another ob if need be. But this is a fantastic practice in every other respect - they get what we've been through, they let me come in as often as I need to put my mind at ease, and I know I will get really careful and frequent monitoring. (Most likely weekly until 32 or 36 weeks, then twice a week at that point.) My friend who recommended this peri can't say enough great things about her c-section experience.

I'm supposed to get my levels re-checked again on Friday, and I see the peri that day as well. I guess we'll see how it goes.


SLESE1014 said...

If it won't hurt anything, I say just keep supplementing. My regular OB said to to that from 12-15 weeks when I was bleeding. It wasn't a definitive cure, but it couldn't hurt. At least that's what he told me.

Good luck! As always keeping you in my thoughts and prayers!!!!

Libby said...

Ahhhhh! How Frustrating! I guess I just don't understand why they won't at least say they will humor you and let you continue the supplements since it can't cause any harm. Even if it's just treating your peace of mind, I would think they would think it was worth it.

Thanks for the shout out too :) I'll have to try to comment on my own site. If it's broke, I'm pretty sure I wouldn't be able to fix it - lol!

Sue said...

My levels were below 20 with both pregnancies, so I am not sure how I feel either. I know with DD, I stopped progesterone at week 11 with 19.8, so it was really close, but it was lower than that this time around and I stopped anyway b/c they told me it was fine. However, I have had a few losses but not nearly as many as you. I was scared of what the additional p4 would do to the baby (as they suggested it was bad) and both times I was over 18, so I went with it. I also never did suppositories, so only had to wean from the PIO. This is hard to say...really. Were you totally off all supplementation for a few days when you got your last level? if so, then it is probably good. If not, then go for another week. I am guessing that your placenta is doing great producing hormones b/c low p4 is pretty rare as a reason for loss (sounds crazy b/c we hear so much about it). But, that being said, you don't want to be the person that has that problem now...I guess I'd have to go ahead and trust my doctors...I am worried that you are in a "too many cooks in the kitchen" place with too many doctor you have to go with your gut on this one. I am guessing is all is good...but, again, I'm on the sunnier side for now and can't assume that things turn out great for everyone. I know this is just incredibly stressful and I'm sorry it can't be easier. Keep us informed! Hugs.

Out With In said...

Yeah, I don't think it can hurt anything, which is probably why the on-call doc just said take it (like saying "whatever"). If it makes you FEEL better, I don't see why they wouldn't prescribe it.
I think everything is fine though. But I understand why you will continue to worry.

Jennifer said...

I've been following your blog for a couple of years now. I wanted to comment because I went through a similar experience with an RI in California for my 4th IVF. I too had bleeding for the first 12 weeks on and off. I was receiving IVIG monthly until week 32 and taking l.ovenox until week 27. And I was also very afraid of weaning off of progesterone at week 12. I was on C.ri.none suppositories. I'm sorry I don't remember my exact progesterone level at that time. In fact I don't think they my RE was testing my level. I continued taking the progesterone until week 14 because of what I read on the RI message boards when my RE warned me of the risks to the babies' development. I then stopped, had no more bleeding but battled with high NK cells throughout the entire pregnancy. I truly believe IVIG, LIT, l.ovenox. and I did take that nasty h.umira :( well as 5 months of bed rest for an incompetent cervix..helped me to deliver twins at 36 weeks by c-section. I know that the worry never stops, it was overwhelming some days. I can only say that you are not alone and it sounds like you are on a good path. I'll be here rooting for you!

Mo and Will said...

This is a tough one. I tend to feel like drugs are drugs and better not to take when unnecessary. So my head would tell me to go with the majority opinion, but I would be scared to death. Although honestly, b/c of my history, I expect to just be scared to death throughout my pregnancy.

I wish it was easier!


Nico said...

If you would like to continue the progesterone but no-one will prescribe it for you, I have some extra I could send...