New to Board (EVERYTHING mentioned, long)

New to Board (EVERYTHING mentioned, long)

Joined: November 16th, 2011, 12:06 am

November 20th, 2011, 12:10 am #1

i am a long time lurker. i have been reading about you and your opinions and expertise with great interest and appreciation over the last year, finally posting myself! anyway, short version of my story: about to turn 43. uneventful natural pregnancy and birth of DS at almost 40. about 2.5 years ago started trying for #2. got pregnant 3 times last year, 3 miscarriages. went to RE after 2nd miscarriage, she says its old eggs. after the 3rd mc i got immune testing at beer center and found i have APS (antiphospholipid syndrome), MTHFR heterozygous, and heterozygous for PAI1. since all 3 relate to clotting problems, i've been on lovenox the last 3 cycles, all BFN. i have also done IVIG the last 3 cycles. also doing acupuncture (for 3 years), fish oil, COQ10, reservatrol and pycnogenol. the network54 immune board doesn't seem very active, and this board seems to be where the action is anyway. my FSH is ok (8.5) but my AMH is bleak (.3 a year ago). i don't know if any of you all have experience with immune issues, or if you'll feel i fit in here (secondary infertility, normal FSH), but i guess i chose to finally post on this board because it is full of so many amazing women with such incredible knowledge. and again, as a long time lurker it just feels like home to me. if you all think it isn't the right fit for me to participate, i certainly understand. i've read enough to understand the sensitive issues at play.

my previous pregnancies have been natural (it's been a year since my last miscarrage), but lately i have been on a plan of alternating one low/mod-stim cycle (225 follistim) with a natural cycle. but last cycle i had two 10mm cysts on CD3. i don't know, maybe they were early recruited follicles (i can't take any estrogen at all due to the clotting issues). i got an LH surge on a ovulation test yesterday, which means i should ovulate tomorrow, CD9, which is early for me and makes me think the cysts may well be early recruits. i guess my big question is what you women are thinking about natural vs. stim cycles these days for those who aren't doing IVF? my thinking has been that even though i'm a poor responder (2 follicles instead of 1, or a lead follicle with small ones that haven't yet caught up in time) that it is worth it to stim to at least double my chances per cycle. i've also been considering whether the stims are gently encouraging my old eggs and positively influencing their development? or are the stims just creating problems for the next cycle with early recruitment or cysts?

though my quest for #2 has proven painful and difficult and success continues to elude me, i wouldn't be where i am (understanding and treating my immune/clotting issues, having a basic understanding of the complex vocabulary of infertility and the various treatments, etc etc etc) without this board and its incredible wealth of information and support. the support is really a beautiful thing and even deeply touches those who are only lurking. so, thank you! really, thank you.

BroodyHen
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Old Timer
Old Timer

November 20th, 2011, 5:41 am #2

I too came to this board in pursuit of no. 2 and was blown away by the warmth, intelligence and strength of the women on this board. The support and knowledge here are life-saving and life-creating, as many credit their successful pregnancies to the ladies on this board. I had my last IVF at 43 and after that went au natural, and am still in hot pursuit of no. 2 (I'm 47 now). I may not be up to date on the latest data but I think at 43 many favour low stim approach with a trigger. Looking back I wish I had done that until 45, but my DH was finished with intervention.

Your post was beautiful. Good luck and keep trying - I have many friends who've had healthy babies at 45.
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Anonymous
Anonymous

November 21st, 2011, 1:35 pm #3

i am a long time lurker. i have been reading about you and your opinions and expertise with great interest and appreciation over the last year, finally posting myself! anyway, short version of my story: about to turn 43. uneventful natural pregnancy and birth of DS at almost 40. about 2.5 years ago started trying for #2. got pregnant 3 times last year, 3 miscarriages. went to RE after 2nd miscarriage, she says its old eggs. after the 3rd mc i got immune testing at beer center and found i have APS (antiphospholipid syndrome), MTHFR heterozygous, and heterozygous for PAI1. since all 3 relate to clotting problems, i've been on lovenox the last 3 cycles, all BFN. i have also done IVIG the last 3 cycles. also doing acupuncture (for 3 years), fish oil, COQ10, reservatrol and pycnogenol. the network54 immune board doesn't seem very active, and this board seems to be where the action is anyway. my FSH is ok (8.5) but my AMH is bleak (.3 a year ago). i don't know if any of you all have experience with immune issues, or if you'll feel i fit in here (secondary infertility, normal FSH), but i guess i chose to finally post on this board because it is full of so many amazing women with such incredible knowledge. and again, as a long time lurker it just feels like home to me. if you all think it isn't the right fit for me to participate, i certainly understand. i've read enough to understand the sensitive issues at play.

my previous pregnancies have been natural (it's been a year since my last miscarrage), but lately i have been on a plan of alternating one low/mod-stim cycle (225 follistim) with a natural cycle. but last cycle i had two 10mm cysts on CD3. i don't know, maybe they were early recruited follicles (i can't take any estrogen at all due to the clotting issues). i got an LH surge on a ovulation test yesterday, which means i should ovulate tomorrow, CD9, which is early for me and makes me think the cysts may well be early recruits. i guess my big question is what you women are thinking about natural vs. stim cycles these days for those who aren't doing IVF? my thinking has been that even though i'm a poor responder (2 follicles instead of 1, or a lead follicle with small ones that haven't yet caught up in time) that it is worth it to stim to at least double my chances per cycle. i've also been considering whether the stims are gently encouraging my old eggs and positively influencing their development? or are the stims just creating problems for the next cycle with early recruitment or cysts?

though my quest for #2 has proven painful and difficult and success continues to elude me, i wouldn't be where i am (understanding and treating my immune/clotting issues, having a basic understanding of the complex vocabulary of infertility and the various treatments, etc etc etc) without this board and its incredible wealth of information and support. the support is really a beautiful thing and even deeply touches those who are only lurking. so, thank you! really, thank you.

BroodyHen
I too got my number two on OE at age 44 thoughe very case is unique you should follow your heart. of course its good also to have a plan B in place as younever know in this IF journey but that not with standing you stand a chance.
Wagura
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ElizaN
ElizaN

November 21st, 2011, 8:42 pm #4

i am a long time lurker. i have been reading about you and your opinions and expertise with great interest and appreciation over the last year, finally posting myself! anyway, short version of my story: about to turn 43. uneventful natural pregnancy and birth of DS at almost 40. about 2.5 years ago started trying for #2. got pregnant 3 times last year, 3 miscarriages. went to RE after 2nd miscarriage, she says its old eggs. after the 3rd mc i got immune testing at beer center and found i have APS (antiphospholipid syndrome), MTHFR heterozygous, and heterozygous for PAI1. since all 3 relate to clotting problems, i've been on lovenox the last 3 cycles, all BFN. i have also done IVIG the last 3 cycles. also doing acupuncture (for 3 years), fish oil, COQ10, reservatrol and pycnogenol. the network54 immune board doesn't seem very active, and this board seems to be where the action is anyway. my FSH is ok (8.5) but my AMH is bleak (.3 a year ago). i don't know if any of you all have experience with immune issues, or if you'll feel i fit in here (secondary infertility, normal FSH), but i guess i chose to finally post on this board because it is full of so many amazing women with such incredible knowledge. and again, as a long time lurker it just feels like home to me. if you all think it isn't the right fit for me to participate, i certainly understand. i've read enough to understand the sensitive issues at play.

my previous pregnancies have been natural (it's been a year since my last miscarrage), but lately i have been on a plan of alternating one low/mod-stim cycle (225 follistim) with a natural cycle. but last cycle i had two 10mm cysts on CD3. i don't know, maybe they were early recruited follicles (i can't take any estrogen at all due to the clotting issues). i got an LH surge on a ovulation test yesterday, which means i should ovulate tomorrow, CD9, which is early for me and makes me think the cysts may well be early recruits. i guess my big question is what you women are thinking about natural vs. stim cycles these days for those who aren't doing IVF? my thinking has been that even though i'm a poor responder (2 follicles instead of 1, or a lead follicle with small ones that haven't yet caught up in time) that it is worth it to stim to at least double my chances per cycle. i've also been considering whether the stims are gently encouraging my old eggs and positively influencing their development? or are the stims just creating problems for the next cycle with early recruitment or cysts?

though my quest for #2 has proven painful and difficult and success continues to elude me, i wouldn't be where i am (understanding and treating my immune/clotting issues, having a basic understanding of the complex vocabulary of infertility and the various treatments, etc etc etc) without this board and its incredible wealth of information and support. the support is really a beautiful thing and even deeply touches those who are only lurking. so, thank you! really, thank you.

BroodyHen
Hi,
if you can't do any estrogen due to your clotting issues, then you probably shouldn't stim because the stimming (and theoretical multiple eggs) creates "supra-natural" (higher than normal) estrogen levels. That is why women with clotting issues usually fail at IVF but get pg naturally. Or at least, that is the little I have gleaned from trying to learn about this myself. I have antiphospholipid syndrome and had 3 mc before treatment and 1 DS at age 43 while on heparin, baby aspirin and predinsone. HTH GL
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ElizaN
ElizaN

November 21st, 2011, 8:48 pm #5

PS Is your protocol taking anticoagulants right after ovulation? The protocol I was on was just baby aspirin until a BFP and then start anticoagulants right after. What I heard was, you need both (baby aspirin and an anticoagulant) because each preforms a different function. Fish oil really won't help much with clotting issues, strictly speaking (ie it doesn't have the power to prolong coagulation times) but if you think it is good for you, by all means take it. I just mean to say you probably need more treatment (baby aspirin and anticoagulants) for the APS. Then, as you know, if you m/c you need to stop all meds and see your Dr. Good luck!
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BroodyHen
BroodyHen

November 22nd, 2011, 11:21 pm #6

Old Timer, Wagura, ElizaN -- thanks so much for responding. it really means a lot to me.

ElizaN - thank you for the thoughts on stimming with antiphospholipid syndrome (APS). it didn't occur to me (or any of my doctors!) that it may be contraindicated. considering that i am a poor responder and haven't gotten a BFP from the two cycles i tried the follistim, i'm not holding out any great hope that it will work. it is just alluring to think of increasing the odds with more eggs for a given cycle. i am taking lovenox and baby aspirin daily. will double the lovenox dose with a BFP. i wonder what your thoughts are on prednisone and how important it is for women with APS? after my beer center work up i decided to go along with all the recommendations (baby aspirin, lovenox, IVIG, synthroid since my thyroid was 2.5) except for LIT and prednisone. somehow i feel really worried about steroids, especially for the whole first trimester. also, did you take progesterone for your successful cycle? i wonder if there are any concerns about APS and P4 support.

thank you!
BroodyHen
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ElizaN
ElizaN

November 23rd, 2011, 6:23 pm #7

did not use progesterone.

did take prednisone, for the first trim. It actually is a risk factor for osteoporosis later if you take it for that lenght of time(along with many other things). I did have a stress fracture in my foot during the pg, at month 7th and gave birth at 36w6d, so who knows if that contributed. DS is very healthy, so I am grateful for that.

I also did meet Drs along the way who poo-pooed it (mostly OB-GYN). I have also read studies saying it is not too useful, so who knows. My protocol was established by a hematologist specialized in clotting disorders and pg. She would have adjusted my dose of anticoagulants based on blood work during the pg (I saw her in the first trim and at the end of the 2nd.

I think LIT and other treatments you mentioned are more contraversial than prednisone.

HTH. Wishing you the best.
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ElizaN
ElizaN

November 23rd, 2011, 6:25 pm #8

sorry, meant to say that IVIG and LIT were both as contraversial, as far as I know. I have never heard of prednisone being so contraversal, just possibly not necessary.
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DeeinNYC
DeeinNYC

November 23rd, 2011, 7:28 pm #9

Old Timer, Wagura, ElizaN -- thanks so much for responding. it really means a lot to me.

ElizaN - thank you for the thoughts on stimming with antiphospholipid syndrome (APS). it didn't occur to me (or any of my doctors!) that it may be contraindicated. considering that i am a poor responder and haven't gotten a BFP from the two cycles i tried the follistim, i'm not holding out any great hope that it will work. it is just alluring to think of increasing the odds with more eggs for a given cycle. i am taking lovenox and baby aspirin daily. will double the lovenox dose with a BFP. i wonder what your thoughts are on prednisone and how important it is for women with APS? after my beer center work up i decided to go along with all the recommendations (baby aspirin, lovenox, IVIG, synthroid since my thyroid was 2.5) except for LIT and prednisone. somehow i feel really worried about steroids, especially for the whole first trimester. also, did you take progesterone for your successful cycle? i wonder if there are any concerns about APS and P4 support.

thank you!
BroodyHen
First of all...so glad that you came out of lurk mode. I am also on an immunne protocol. I do not have APS but have slightly elevated NK cells and am compound hetero for MTHFR. I am on lovenox, prednisone, baby aspirin, progesterone and estrogen and am doing inytralipids. I know that Dr. Beer recommended prednisone in his book and my Dr whom normally used Dexamathasone during an IVF cycle, switched me to prednisone when I did an immune protocol with my IVF. My peri also has me on prednisone. I have not have any issues with it and many seem to prescribe it. Good luck.
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Antonialisa
Antonialisa

November 25th, 2011, 1:06 am #10

i am a long time lurker. i have been reading about you and your opinions and expertise with great interest and appreciation over the last year, finally posting myself! anyway, short version of my story: about to turn 43. uneventful natural pregnancy and birth of DS at almost 40. about 2.5 years ago started trying for #2. got pregnant 3 times last year, 3 miscarriages. went to RE after 2nd miscarriage, she says its old eggs. after the 3rd mc i got immune testing at beer center and found i have APS (antiphospholipid syndrome), MTHFR heterozygous, and heterozygous for PAI1. since all 3 relate to clotting problems, i've been on lovenox the last 3 cycles, all BFN. i have also done IVIG the last 3 cycles. also doing acupuncture (for 3 years), fish oil, COQ10, reservatrol and pycnogenol. the network54 immune board doesn't seem very active, and this board seems to be where the action is anyway. my FSH is ok (8.5) but my AMH is bleak (.3 a year ago). i don't know if any of you all have experience with immune issues, or if you'll feel i fit in here (secondary infertility, normal FSH), but i guess i chose to finally post on this board because it is full of so many amazing women with such incredible knowledge. and again, as a long time lurker it just feels like home to me. if you all think it isn't the right fit for me to participate, i certainly understand. i've read enough to understand the sensitive issues at play.

my previous pregnancies have been natural (it's been a year since my last miscarrage), but lately i have been on a plan of alternating one low/mod-stim cycle (225 follistim) with a natural cycle. but last cycle i had two 10mm cysts on CD3. i don't know, maybe they were early recruited follicles (i can't take any estrogen at all due to the clotting issues). i got an LH surge on a ovulation test yesterday, which means i should ovulate tomorrow, CD9, which is early for me and makes me think the cysts may well be early recruits. i guess my big question is what you women are thinking about natural vs. stim cycles these days for those who aren't doing IVF? my thinking has been that even though i'm a poor responder (2 follicles instead of 1, or a lead follicle with small ones that haven't yet caught up in time) that it is worth it to stim to at least double my chances per cycle. i've also been considering whether the stims are gently encouraging my old eggs and positively influencing their development? or are the stims just creating problems for the next cycle with early recruitment or cysts?

though my quest for #2 has proven painful and difficult and success continues to elude me, i wouldn't be where i am (understanding and treating my immune/clotting issues, having a basic understanding of the complex vocabulary of infertility and the various treatments, etc etc etc) without this board and its incredible wealth of information and support. the support is really a beautiful thing and even deeply touches those who are only lurking. so, thank you! really, thank you.

BroodyHen
Broodyhen,

I have nothing to offer on immune issues, but I would be interested in keeping in touch on low stim timed intercourse protocols. I will try IVF very soon (in January I think) but I would like to experiment with low stims to get more than one egg per month going. If you can get 2 or 3 eggs every month then you double or triple your chances, right?

I am 41, high fsh, no babies yet, ttc over 2 years. I'm on estinyl with Dr Check since earlier this year and reacting really well. FSH is under control and my antral follicle count has totally rebounded into (gasp) double digits some months. So I'd like to capitalize on that and get many eggs per cycle. Last month I did 75 IU daily of gonal-f from day 7 and got 2 dominant follicles - but unfortunately the eggs did not release despite a shot of Ovidrel.

How did you end up at 225Ui per day? What is your antral follicle count every month on average and how many follicles do you end up with after the stims?

What I'm wondering is, in thinking about a protocol, how does one determine the perfect balance between stimulating more eggs but not overstimming and getting fewer, or frying the eggs? I have a phone call with Dr. Check soon - an early proponent of low stims - to talk about how last month went and future cycles. I will like to ask how he determines what dose is appropriate and I will share his answers on this Board. Any further info you have that can inform such a discussion would be most welcome.

Good luck to you.
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