When I questioned how more estrogen would help given that my E2 was over 3000 the last time we checked it (which was a week before my cycle was cancelled mind you) she said she thinks they were trying to increase the dose too late in the game. Something about that statement just makes my uneasy. I get that this whole IVF thing is trial and error, but I am not willing to invest 2 more months of by time, money, and more importantly my sanity to be cancelled again.
So this is the email I sent to my clinic. I proposes a different protocol that I did quite a bit of research on. If anyone has any experience with this FET protocol or know's someone that does, I'd love to hear about it!
Here's the email:
" Nurse J,
After my consult with Dr. E yesterday, I did some research regarding lining issues and PCOS. She discussed doing the same protocol as last time (BCP’s, Lupron, Estrace) but doing the Estrace in a higher dose. Of course I didn’t think of any of these questions until after my appointment, but was hoping you can help me address some of the concerns.
- · The first question is, does it make any sense to test my testosterone levels again?
- · Additionally, I would like to have my dosage of Metformin increased. It appears that all other PCOS patients I have talked to are taking at least triple the dosage I am taking (500mg) currently. Most of them are not insulin resistant. I think the side effect profile of this drug is minimal enough to increase my dosage. I am familiar with the signs of hypoglycemia and can report this to you and decrease the dosage if necessary.
- · Finally, in light of what happened last cycle and the huge time/financial/emotional toll this has taken, I am not comfortable moving forward under the assumption that more estrace is going to be the key. I have spoken to several other PCOS patients and have found that they were successful when birth control pills and lupron were eliminated from the protocol. Many of the protocols started with estrace or micronized estradiol on CD 1 at 2mg and increased the dose every few days (up to 6mg QD). The Lupron and BCP’s were removed because these have been found to interfere with lining. Do you believe that this could be the problem for me? Given that I have never ovulated on my own, I am not sure the taking Lupron to suppress ovulation is necessary.
I am really interested in trying an Exogenous estrogen and progesterone cycle (EEP). This is the information I have found on this protocol:
“2) EEP - Exogenous Estrogen and Progesterone - In this cycle, you take estrogen and progesterone to regulate your cycle and thicken your lining. This is the timeline one clinic does it on... others will vary by a day or two. Start taking estrogen pills and patched on cd 1. Go in for bloodwork/lining check on cd 13. If everything looks good, start progesterone that evening. Transfer on cd 16 or cd 18, depending on the age of the embryos.”
Research studies suggest that the success rate with this protocol and the GnRh protocol are the same:
I think this will also be better in the interest of time because quite frankly, I don’t want to wait another 2 months before we can transfer. I realize that I am trying to grab the bull by the horn in a field that I am not trained in, but I am my own best advocate.
Thanks for all of your help with this Jennifer. I appreciate it.
Emily
(((HUGS))) I really hope this time is the charm, whatever the protocol.
ReplyDeleteI think that this sounds very well worded and polite. I think you have done research and it shows!
ReplyDeleteI agree with Michele. You have clearly done your research and have taken the time to write out a well thought out protocol as well as questions and concerns. I hope the RE will respect your thoughts and be open to your plan.
ReplyDeleteNice work and good for you for standing up for yourself. It's a hard thing to do and you don't want to seem like a know-it-all patient, but with this much on the line you have to be. I really hope this works for you!
ReplyDeleteGreat letter, well supported with arguements.
ReplyDeleteGood for you to stand up for your self, as there is nobody else that will do it for you. I´m sure they will look better at your case and come with suggestments that you are satisfied with.
I think the email sounds great. On my FET we used BCP but I think that was more to time my cycle for travel concerns (out of state clinic). But lupron... I agree and don't see how that's necessary in an FET. I'm interested to see what the clinic gets back to you with! Good for you for being your own advocate!!
ReplyDeleteI wasn't PCOS...but I didn't do Lupron or BCP...I simply started Estrace (vaginal and patches) on CD1...and that was it. It was very easy...I started progesterone on CD15 when my lining was at 9mm, and transferred on CD21. It was MUCH quicker than having to go through all the BCP, Lupron, blah blah blah. Of course, again, I don't understand the ins and outs of how certain clinics make their choices...I think some just have a 'habit' and I don't know how much they individualize FET cycles...
ReplyDeleteHope you heard back from them by now...Interested to hear how they responded.