protocol unease...listen to your instinct!

BondletMom · 10-23-2009, 03:19 PM

Hi, dear ladies. I wanted to post this in hopes it might help someone else. It is not meant to create confusion or alarm! However I wish I could turn back time and redo my first IVF cycle knowing what I know now, and am incredibly thankful for how my second cycle has changed because of the last few weeks.

My first cycle I was told to take 300iu Gonal-F. I know my body and I knew that amount was way too high. I voiced my concerns to my RE who dismissed me, convinced me it was fine, and I overstimmed. My e2 went from under 40 to over 500 in 4 days. I only stimmed for 8 days and was triggered too early for optimal egg maturation. Egg quality was obviously affected when out of 17 "mature" eggs only 11 fertilized, 6 continued and were of fair to bad quality. That was in April 2008. As I prepared for my next IVF cycle I worried about overstimming and was relieved when the nurse said that my RE recognized what happened last time (a bit too late, unfortunately) and wanted to slow me down. To my confusion, he added 150iu Menopur starting day 1 of stims along w/Gonal-F. For 2 weeks I researched, asked opinions of on-line REs and put all the information together, arriving at the conclusion that my protocol was very, very wrong. I called the nurse and again voiced my concerns which she promptly dismissed with the explanation that the protocol was based on my hormone levels. After that call I was still very uneasy and my woman's instinct was screaming that something was very wrong.

After more late nights researching on-line I wrote a one-page letter to my RE detailing my concerns, mainly that he was adding more FSH (in the Menopur) knowing how fast I stimmed plus the fact that putting too much LH into a stim cycle too early can have a negative effect on egg quality. I faxed the letter at midnight and waited. First thing the next morning the nurse called, said she'd showed my letter to my RE who said that if I wanted to lower my med dose then fine. No explanations, no answers. At that point I forced myself to respond that his response was not OK, I wanted to know why he was ordering the meds he did and once again made it clear what my concerns were. The nurse said she would try to talk to him on Monday morning as he was gone for the rest of the day/weekend. When I hung up I sat in my chair, my heart sinking because I knew I had to cancel the cycle. I knew I had to put off IVF until I could find an RE who would take me seriously, who would listen to me and not dismiss my concerns. As I was sitting there trying not to cry, the phone rang.

The IVF nurse said my RE had popped back in and she cornered him - literally, she stepped in front of him and asked him for just two minutes of his undivided attention and proceeded to give him my letter, asked him to read every word of it, then spread out all my charts from the last cycle. He read the letter, studied my last cycle's results, and said, "She's absolutely right, this is the worst protocol she could possibly be on." At that point I broke down sobbing. All the hours I spent on-line, all the opinions and research, all the phone calls and risking being a nuisance patient paid off. My protocol is changed (Gonal-F lowered to 150iu, Menopur at 75iu) and my hope restored for my second IVF cycle.

Ladies, I encourage you to question everything. Research every medication prescribed, the dose, the timing, everything. Get on-line and find as many opinions on your case as you can. If your gut instinct says something isn't right don't ignore it! Take the risk of being a nuisance and get answers. I am not a pushy person so this was really a stretch for me to do what I did yet had I not done this I would have gone into a cycle almost sure to fail because of the wrong protocol.

I've posted my concerns w/my protocol on forums and have been told to just go with the flow, trust my RE, etc. Thankfully I didn't do that. Not that every RE gets it wrong - far from it! But in my situation I just knew something was not right and had to act on it, even if it meant challenging my doctor. I hope this post will help someone else who might be wavering as far as protocol goes.

iMama · 10-26-2009, 12:46 PM

ok. So you did scare me. But thanks so much for the info!!!!! I'm at a loss right now as to how to approach my RE with my concern, but here it is: I don't have an o-ing issue, great hormones, and my calendar says I'll be on 300 iu Follistim for 6 days and won't be monitored at all until the 7th day- how would he know if I was overstimming? They'll take a baseline E2 4 days prior to starting the follistim, but that's it.
Can you give me some advice on how to approach this issue-my contact is all with the nurse coordinator now, should I push to talk with the RE, or let it all go through her?

10-23-2009, 03:19 PM	#1 (permalink)
BondletMom 300-399 post 5 of hearts Join Date: May 2007 Location: AZ Posts: 300	protocol unease...listen to your instinct! Hi, dear ladies. I wanted to post this in hopes it might help someone else. It is not meant to create confusion or alarm! However I wish I could turn back time and redo my first IVF cycle knowing what I know now, and am incredibly thankful for how my second cycle has changed because of the last few weeks. My first cycle I was told to take 300iu Gonal-F. I know my body and I knew that amount was way too high. I voiced my concerns to my RE who dismissed me, convinced me it was fine, and I overstimmed. My e2 went from under 40 to over 500 in 4 days. I only stimmed for 8 days and was triggered too early for optimal egg maturation. Egg quality was obviously affected when out of 17 "mature" eggs only 11 fertilized, 6 continued and were of fair to bad quality. That was in April 2008. As I prepared for my next IVF cycle I worried about overstimming and was relieved when the nurse said that my RE recognized what happened last time (a bit too late, unfortunately) and wanted to slow me down. To my confusion, he added 150iu Menopur starting day 1 of stims along w/Gonal-F. For 2 weeks I researched, asked opinions of on-line REs and put all the information together, arriving at the conclusion that my protocol was very, very wrong. I called the nurse and again voiced my concerns which she promptly dismissed with the explanation that the protocol was based on my hormone levels. After that call I was still very uneasy and my woman's instinct was screaming that something was very wrong. After more late nights researching on-line I wrote a one-page letter to my RE detailing my concerns, mainly that he was adding more FSH (in the Menopur) knowing how fast I stimmed plus the fact that putting too much LH into a stim cycle too early can have a negative effect on egg quality. I faxed the letter at midnight and waited. First thing the next morning the nurse called, said she'd showed my letter to my RE who said that if I wanted to lower my med dose then fine. No explanations, no answers. At that point I forced myself to respond that his response was not OK, I wanted to know why he was ordering the meds he did and once again made it clear what my concerns were. The nurse said she would try to talk to him on Monday morning as he was gone for the rest of the day/weekend. When I hung up I sat in my chair, my heart sinking because I knew I had to cancel the cycle. I knew I had to put off IVF until I could find an RE who would take me seriously, who would listen to me and not dismiss my concerns. As I was sitting there trying not to cry, the phone rang. The IVF nurse said my RE had popped back in and she cornered him - literally, she stepped in front of him and asked him for just two minutes of his undivided attention and proceeded to give him my letter, asked him to read every word of it, then spread out all my charts from the last cycle. He read the letter, studied my last cycle's results, and said, "She's absolutely right, this is the worst protocol she could possibly be on." At that point I broke down sobbing. All the hours I spent on-line, all the opinions and research, all the phone calls and risking being a nuisance patient paid off. My protocol is changed (Gonal-F lowered to 150iu, Menopur at 75iu) and my hope restored for my second IVF cycle. Ladies, I encourage you to question everything. Research every medication prescribed, the dose, the timing, everything. Get on-line and find as many opinions on your case as you can. If your gut instinct says something isn't right don't ignore it! Take the risk of being a nuisance and get answers. I am not a pushy person so this was really a stretch for me to do what I did yet had I not done this I would have gone into a cycle almost sure to fail because of the wrong protocol. I've posted my concerns w/my protocol on forums and have been told to just go with the flow, trust my RE, etc. Thankfully I didn't do that. Not that every RE gets it wrong - far from it! But in my situation I just knew something was not right and had to act on it, even if it meant challenging my doctor. I hope this post will help someone else who might be wavering as far as protocol goes.

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10-26-2009, 12:46 PM	#2 (permalink)
iMama 0-99 post 2 of hearts Join Date: Mar 2009 Location: Northern CA Posts: 58	ok. So you did scare me. But thanks so much for the info!!!!! I'm at a loss right now as to how to approach my RE with my concern, but here it is: I don't have an o-ing issue, great hormones, and my calendar says I'll be on 300 iu Follistim for 6 days and won't be monitored at all until the 7th day- how would he know if I was overstimming? They'll take a baseline E2 4 days prior to starting the follistim, but that's it. Can you give me some advice on how to approach this issue-my contact is all with the nurse coordinator now, should I push to talk with the RE, or let it all go through her?