What's next after follistim?

hol · 06-13-2009, 05:35 PM

Ok so I have some questions. We were not planning on needing multiple cycles to know if we were going to be blessed with a child, but we have not been able to complete a cycle yet (due to poor response). How many cycles does your Dr do before he decides a med is not going to work? What has your Dr tried after follisim if no response to follistim? We are paying out of pocket and I fear the money will run out before we even get to a point where we get to have a two week wait.

Alioop · 07-15-2009, 05:14 PM

I just got my results today, not responding to follistim and menopur.
I don't know what they are going to do about it, but I will certainly share when I find out. I am waiting for the doctors to have their staffing meeting on the 28th, they will go over my chart and come up with a new game plan. I can let you know then!

hol · 07-15-2009, 05:30 PM

Thanks I am interested to hear what they say. Since my original post I have actually gotten to trigger twice (the last one was yesterday). So far I have only produced one follicle at a time and my estradiol levels have been really low. Its my understanding that estradiol indicates if a folllicle will produce a mature egg so I am confused as to why they are even having me trigger. We are doing timed intercourse cycles, and are concidering an IUI as a last ditch effort. My insurance does not cover any infertility treatments or meds. I hope they can give you some encouraging news after they review your case. Good luck.

Alioop · 07-15-2009, 06:44 PM

Good luck to you as well!
It looks like you and I have had similar problems. For background - Probably have PCOS (no one has told me flat out I have it) and do not get AF very often on my own, my FSH is borderline menopausal. DH has issues as well so we are slated for ICSI. Last month was suppose to be my first cycle and was cancelled when they found cysts in my ovaries. It was causing my estradiol level to go to 209; Which was the number they should have seen 1 week later than they did. They had me on BC and they cancelled the cycle to extend the BC another month to shrink the cysts. This month the BC made the cysts small enough, my estradiol was 29 and was cleared to start the stim meds. I started the stim meds on fri, and had follow-up bloodwork with ultrasound today. I got my results this afternoon....My estradiol was 56, which they said was way too low, and there were no measurable follicles. Long and short, you and I have got something similar as far as wierd hormone levels but they are cancelling my cycles.... Wondering why they are continuing yours with those levels.
Does any of the other information even partially pertain to you too?
Where are you going for your ART? My state requires insurance companies to cover some infertility treatment. But, I still chose not to go with an independent fertility clinic. If you are not getting "that warm fuzzy feeling" from your RE, get a second opinion. I chose to go with a University Hospital, basically because I figured doctors should do only doctoring. I do not need a doctor who is the MD, CEO, CFO, etc. that was my logic. Otherwise, I will send you a message on the 28th or 29th! I REALLY HOPE I CAN HELP!

hol · 07-16-2009, 06:10 PM

I also have PCOS. My DH has no issues. So far I have not had any cysts large enough to keep me from cycling. I have never had an E2 above 130. My last one proir to trigger this month was in the 80's. The only reason that I can come up with for them having me trigger with such low levels is for them to save themselves money. I have been paying a package price that covers all labs and ultrasounds (no matter how many I need per cycle). If my cycle gets cancelled then I get almost 2/3 of the payment back. By having me trigger so early they don't loose money from multiple ultrasounds and labs, and I have to pay the full package price again for the next cycle. I could be wrong about that but it doesn't make sense to me. I know of at least 4 other people who have gone to this Dr and they all loved him. I have thought about getting a seccond opinion, but have decided to try and get an appointment to actually see my Dr (I have only seen him twice once for my initial visit and the second was when he did my HSG), the nurses pretty much do everything except write the protocols.

I live in Ohio but am going to Indiana for my treatment. Ohio to my knowledge only requires insurance coverage for diagnosing infertility not the actual treatment.

To add another complication into the mix my hair has started to fall out (Im talking bald spots not just thinning). I met with a dermatologist today and she confirmed my fears that it is most likely from my fertility meds and will not improve for approx 6 months after stopping treatments.

Let me know how things go with you.

Alioop · 07-29-2009, 08:39 PM

Just following up....
I have not received a call from the doctors office with the new treatment plan. I left a message with my coordinator, but have not received a return call. I will call her again tomorrow and let you know when I get word. Just wanted you to know!!!

Alioop · 07-30-2009, 05:28 PM

Okay Hol, here is the update!!!

Staying on Follistim... going from 225iui to 375 iui
Menopur dosage is doubled - 2 vials once a day to 2 vials twice and day.
Lupron is being added to my treatment plan. For me it will pull double duty - Supressing certain hormone levels (I have high FSH and weird estrogen levels) and keeping my cysts in check.

This was my first time taking stim meds, so I did not think they would just take me off any one medication... How long have you been taking Follistim and how many iui?
What other meds and doasges are you on? Did you discontinue them and tell your RE about your hair? Have you been able to set up the appointment to see your RE?
I have been very concerned about your experience with your doctor. Hopefully this information will help you out, please let me know how you are doing!!!

hol · 08-03-2009, 07:46 PM

Ok so I have an update too... There is hope for low estradiol levels. I went for my progesterone level one week after trigger and asked the nurse if she had ever seen a success with estradiol levels like mine. The answer was "No, but I have only been here for four years." She then recommended I take a month off and then talk with the Dr about where we go from here (that was my plan anyway). I was an absolute emotional wreck this past month so we were having this conversaion thru mu sobs. My progesterone level was low and they told me to start taking my progesterone support (I loathe it by the way, and almost did not start it b/c I was not given much hope). Well I waited and no AF so I took a test and it was pos!! So far I have had 2 betas #1 82 #2 266, and now am scheduled for an us with the Dr in 2 wks.

I did follistim for four months with doses up to 225 units, and letrazole up to 5mg CD 3-7 The letrazole was added after the first cycle when my estradiol never made it above 30. Prior to that I have been on metformin and, I also have done a total of 11 cycles with Clomid Doses up to 200mg.

I read all these posts and threads and see sooo many women that have been strugging for much longer than I have, and wish that no one would have to go through this. I know that this probably doesn't make much sense (and I hope I don't come across insensitive), but I almost feel guilty.

On a positive note my hair loss has stopped (it must have been the meds), and now I just have to wait for it to grow back.

I wish you the best with your new protocol. Have you started your next cycle yet? Are you doing iui or ivf? I would still like to hear how things are going. I feel like I am walking on eggshells because of all of the losses I hear about.

Sorry this was so looong.

Alioop · 08-05-2009, 05:29 PM

Yaaaaayyyyyyyyyy!!! CONGRATULATIONS!!!!!!
That is completely awesome!! It is like people say, you get pregnant when you least expect it! As far as the guilt factor, you should not be guilty.... just accept that you were fortunate enough to be blessed sooner than others. And really, 11 cycles on Clomid and 4 months on Follistim sounds like plenty of time to me. So enjoy the moment watching your hair and belly grow!!!!

AFM - I am doing IVF/ICSI. I am currently doing a 10 day course of Provera to get AF since I am highly irregular. This seems like a treat considering they could have made me wait to be late and then put me on 3 weeks of BCPs. Then I can do my baseline u/s and bloodwork. I started accupuncture last week and I am hoping it will help me actually complete a cycle. So, I am hoping to cycle end of the month or beginning of next month!!! Let me know how the u/s goes!!!!!!

hol · 08-17-2009, 03:41 PM

Alioop- I hope things are going well with your cycle. I assume you have started (or will be starting soon) with your next cycle of meds. How is the accupuncture going? I work with a physician that does accupuncture and am considering trying it to help with my nausea. My ultrasound went great. We saw and got to listen to the heartbeat. My Dr said that since I live over an hour away he would release me to start going to my OB, but he also gave me the option of coming back in two weeks for another u/s (I am going back for the u/s). I like the reassurance of being able to see with my eyes. Good luck and let me know how things go with the new protocol.

06-13-2009, 05:35 PM	#1 (permalink)
hol 0-99 post 2 of hearts Join Date: Jun 2009 Location: Ohio Posts: 22	What's next after follistim? Ok so I have some questions. We were not planning on needing multiple cycles to know if we were going to be blessed with a child, but we have not been able to complete a cycle yet (due to poor response). How many cycles does your Dr do before he decides a med is not going to work? What has your Dr tried after follisim if no response to follistim? We are paying out of pocket and I fear the money will run out before we even get to a point where we get to have a two week wait.

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07-15-2009, 05:14 PM	#2 (permalink)
Alioop 200-299 post 4 of hearts Join Date: May 2009 Location: Chicagoland Posts: 295	I just got my results today, not responding to follistim and menopur. I don't know what they are going to do about it, but I will certainly share when I find out. I am waiting for the doctors to have their staffing meeting on the 28th, they will go over my chart and come up with a new game plan. I can let you know then!

07-15-2009, 05:30 PM	#3 (permalink)
hol 0-99 post 2 of hearts Join Date: Jun 2009 Location: Ohio Posts: 22	Thanks I am interested to hear what they say. Since my original post I have actually gotten to trigger twice (the last one was yesterday). So far I have only produced one follicle at a time and my estradiol levels have been really low. Its my understanding that estradiol indicates if a folllicle will produce a mature egg so I am confused as to why they are even having me trigger. We are doing timed intercourse cycles, and are concidering an IUI as a last ditch effort. My insurance does not cover any infertility treatments or meds. I hope they can give you some encouraging news after they review your case. Good luck.

07-15-2009, 06:44 PM	#4 (permalink)
Alioop 200-299 post 4 of hearts Join Date: May 2009 Location: Chicagoland Posts: 295	Good luck to you as well! It looks like you and I have had similar problems. For background - Probably have PCOS (no one has told me flat out I have it) and do not get AF very often on my own, my FSH is borderline menopausal. DH has issues as well so we are slated for ICSI. Last month was suppose to be my first cycle and was cancelled when they found cysts in my ovaries. It was causing my estradiol level to go to 209; Which was the number they should have seen 1 week later than they did. They had me on BC and they cancelled the cycle to extend the BC another month to shrink the cysts. This month the BC made the cysts small enough, my estradiol was 29 and was cleared to start the stim meds. I started the stim meds on fri, and had follow-up bloodwork with ultrasound today. I got my results this afternoon....My estradiol was 56, which they said was way too low, and there were no measurable follicles. Long and short, you and I have got something similar as far as wierd hormone levels but they are cancelling my cycles.... Wondering why they are continuing yours with those levels. Does any of the other information even partially pertain to you too? Where are you going for your ART? My state requires insurance companies to cover some infertility treatment. But, I still chose not to go with an independent fertility clinic. If you are not getting "that warm fuzzy feeling" from your RE, get a second opinion. I chose to go with a University Hospital, basically because I figured doctors should do only doctoring. I do not need a doctor who is the MD, CEO, CFO, etc. that was my logic. Otherwise, I will send you a message on the 28th or 29th! I REALLY HOPE I CAN HELP!

07-16-2009, 06:10 PM	#5 (permalink)
hol 0-99 post 2 of hearts Join Date: Jun 2009 Location: Ohio Posts: 22	I also have PCOS. My DH has no issues. So far I have not had any cysts large enough to keep me from cycling. I have never had an E2 above 130. My last one proir to trigger this month was in the 80's. The only reason that I can come up with for them having me trigger with such low levels is for them to save themselves money. I have been paying a package price that covers all labs and ultrasounds (no matter how many I need per cycle). If my cycle gets cancelled then I get almost 2/3 of the payment back. By having me trigger so early they don't loose money from multiple ultrasounds and labs, and I have to pay the full package price again for the next cycle. I could be wrong about that but it doesn't make sense to me. I know of at least 4 other people who have gone to this Dr and they all loved him. I have thought about getting a seccond opinion, but have decided to try and get an appointment to actually see my Dr (I have only seen him twice once for my initial visit and the second was when he did my HSG), the nurses pretty much do everything except write the protocols. I live in Ohio but am going to Indiana for my treatment. Ohio to my knowledge only requires insurance coverage for diagnosing infertility not the actual treatment. To add another complication into the mix my hair has started to fall out (Im talking bald spots not just thinning). I met with a dermatologist today and she confirmed my fears that it is most likely from my fertility meds and will not improve for approx 6 months after stopping treatments. Let me know how things go with you.

07-29-2009, 08:39 PM	#6 (permalink)
Alioop 200-299 post 4 of hearts Join Date: May 2009 Location: Chicagoland Posts: 295	Just following up.... I have not received a call from the doctors office with the new treatment plan. I left a message with my coordinator, but have not received a return call. I will call her again tomorrow and let you know when I get word. Just wanted you to know!!!

07-30-2009, 05:28 PM	#7 (permalink)
Alioop 200-299 post 4 of hearts Join Date: May 2009 Location: Chicagoland Posts: 295	Okay Hol, here is the update!!! Staying on Follistim... going from 225iui to 375 iui Menopur dosage is doubled - 2 vials once a day to 2 vials twice and day. Lupron is being added to my treatment plan. For me it will pull double duty - Supressing certain hormone levels (I have high FSH and weird estrogen levels) and keeping my cysts in check. This was my first time taking stim meds, so I did not think they would just take me off any one medication... How long have you been taking Follistim and how many iui? What other meds and doasges are you on? Did you discontinue them and tell your RE about your hair? Have you been able to set up the appointment to see your RE? I have been very concerned about your experience with your doctor. Hopefully this information will help you out, please let me know how you are doing!!!

08-03-2009, 07:46 PM	#8 (permalink)
hol 0-99 post 2 of hearts Join Date: Jun 2009 Location: Ohio Posts: 22	Ok so I have an update too... There is hope for low estradiol levels. I went for my progesterone level one week after trigger and asked the nurse if she had ever seen a success with estradiol levels like mine. The answer was "No, but I have only been here for four years." She then recommended I take a month off and then talk with the Dr about where we go from here (that was my plan anyway). I was an absolute emotional wreck this past month so we were having this conversaion thru mu sobs. My progesterone level was low and they told me to start taking my progesterone support (I loathe it by the way, and almost did not start it b/c I was not given much hope). Well I waited and no AF so I took a test and it was pos!! So far I have had 2 betas #1 82 #2 266, and now am scheduled for an us with the Dr in 2 wks. I did follistim for four months with doses up to 225 units, and letrazole up to 5mg CD 3-7 The letrazole was added after the first cycle when my estradiol never made it above 30. Prior to that I have been on metformin and, I also have done a total of 11 cycles with Clomid Doses up to 200mg. I read all these posts and threads and see sooo many women that have been strugging for much longer than I have, and wish that no one would have to go through this. I know that this probably doesn't make much sense (and I hope I don't come across insensitive), but I almost feel guilty. On a positive note my hair loss has stopped (it must have been the meds), and now I just have to wait for it to grow back. I wish you the best with your new protocol. Have you started your next cycle yet? Are you doing iui or ivf? I would still like to hear how things are going. I feel like I am walking on eggshells because of all of the losses I hear about. Sorry this was so looong.

08-05-2009, 05:29 PM	#9 (permalink)
Alioop 200-299 post 4 of hearts Join Date: May 2009 Location: Chicagoland Posts: 295	Yaaaaayyyyyyyyyy!!! CONGRATULATIONS!!!!!! That is completely awesome!! It is like people say, you get pregnant when you least expect it! As far as the guilt factor, you should not be guilty.... just accept that you were fortunate enough to be blessed sooner than others. And really, 11 cycles on Clomid and 4 months on Follistim sounds like plenty of time to me. So enjoy the moment watching your hair and belly grow!!!! AFM - I am doing IVF/ICSI. I am currently doing a 10 day course of Provera to get AF since I am highly irregular. This seems like a treat considering they could have made me wait to be late and then put me on 3 weeks of BCPs. Then I can do my baseline u/s and bloodwork. I started accupuncture last week and I am hoping it will help me actually complete a cycle. So, I am hoping to cycle end of the month or beginning of next month!!! Let me know how the u/s goes!!!!!!

08-17-2009, 03:41 PM	#10 (permalink)
hol 0-99 post 2 of hearts Join Date: Jun 2009 Location: Ohio Posts: 22	Alioop- I hope things are going well with your cycle. I assume you have started (or will be starting soon) with your next cycle of meds. How is the accupuncture going? I work with a physician that does accupuncture and am considering trying it to help with my nausea. My ultrasound went great. We saw and got to listen to the heartbeat. My Dr said that since I live over an hour away he would release me to start going to my OB, but he also gave me the option of coming back in two weeks for another u/s (I am going back for the u/s). I like the reassurance of being able to see with my eyes. Good luck and let me know how things go with the new protocol.