New to this forum, FSH of 18 - freaking out, help! (long, sorry)

New to this forum, FSH of 18 - freaking out, help! (long, sorry)

Joined: November 30th, 2011, 3:02 am

November 30th, 2011, 3:33 am #1

I'm new to this forum, and sadly, more or less new to this entire situation. I'm completely freaking out about it all and could really use the support/advice from people who have been through this. If my next FSH test is 16 or above, our current RE won't treat us, def no IVF; it's basically, a "wait and hope for the best" situation. I'm starting to feel like there's no options for us, that we can't get pregnant and that it will be just impossible with an FSH so high. I can't even contemplate the idea of DEs right now.

My husband and I have been TTC for 5 months now, but I was alerted to my "exceedingly high" FSH of 18 this last month. I'm 35 (DH is 34). After having been on BCP for about 13 years (I stopped taking it 1 year ago), I started trying to use OPKs and for 4 months straight never once got a positive result. I would start testing on Day 7 and then use them for about 2 weeks. Needless to say, BFNs for those 4 months.

When I mentioned it to my OBGYN, she was concerned but not too much because I have regular periods, even right away after coming off BCP. They avg 26-32 days, usually 26 or 28, def every month (~4 days). In caution, however, she did Day 3 testing. My FSH came back at 18, my E2 at 38. She told me that's the level where they tell patients they'll have to use DEs and to see an RE right away.

So we did (in LA), did the whole workup to see if I had any ovulation issues. My follicle count this past month was 8 -- 5 on the right, 3 on the left. RE said that was maybe 2-4 low for my age. There was a dominant one on the right that grew to 21mm. I started using OPKs to test, and low and behold, got my first positive OPK on D10...and then again for the next EIGHT days. It was really dark on D10, then got lighter, then dark again on D15. My RE thought I had false positives, then said that my D15 test was probably the accurate one.

So on D15 and D16 I felt that right-side pinching cramping. Weird thing is, since I've been off BCP I've NEVER felt that same pinching on the left side. I've felt it before a few times on the right.

We tested my progesterone on D15 and it came back showing I was in the periovulatory stage. Then tested again on D24; it was 12.7, which he said was good and showed I ovulated, and have no ovulatory issues. Then we got the DOR and "unexplained infertility" diagnosis.

I'm so frustrated, angry, sad, upset...you name it. Not being able to have our own baby is my worst-case scenario and I'm just feeling so powerless. A friend rec'd I get a second opinion from Hal Danzer, so we have an appt in a few weeks, and I also started acupuncture 4 weeks ago (Dr. Cai at Tao of Wellness), but is it really as hopeless as I've been told? Are there people out there who find treatment with an FSH of 18 and are successful (w/o DEs)?

Ugh, sorry for the long post...this sucks and I'm lost!


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Mrs. McIrish
Mrs. McIrish

November 30th, 2011, 3:39 am #2

You sound like me a year ago. I had been trying for about 6 months but "knew" something was wrong. My FSH came back at 12.1 then. In the past year, my FSH has risen to 17.3 (last tested in June11). I've failed 4 IUI's and 2 IVFs. I was given the DE speech today and my RE won't cycle me anymore unless I do DE(see my post below). I'm grasping at straws myself but you are younger so your egg quality "should" be much better. You should be able to find an RE that will cycle with you at FSH 18. You won't know how you respond to drugs until you do IVF. I'm so sorry you got the DE speech before you even started. Hopefully someone on here can give you an FSH friendly RE in LA.
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Jen
Jen

November 30th, 2011, 5:12 am #3

I'm new to this forum, and sadly, more or less new to this entire situation. I'm completely freaking out about it all and could really use the support/advice from people who have been through this. If my next FSH test is 16 or above, our current RE won't treat us, def no IVF; it's basically, a "wait and hope for the best" situation. I'm starting to feel like there's no options for us, that we can't get pregnant and that it will be just impossible with an FSH so high. I can't even contemplate the idea of DEs right now.

My husband and I have been TTC for 5 months now, but I was alerted to my "exceedingly high" FSH of 18 this last month. I'm 35 (DH is 34). After having been on BCP for about 13 years (I stopped taking it 1 year ago), I started trying to use OPKs and for 4 months straight never once got a positive result. I would start testing on Day 7 and then use them for about 2 weeks. Needless to say, BFNs for those 4 months.

When I mentioned it to my OBGYN, she was concerned but not too much because I have regular periods, even right away after coming off BCP. They avg 26-32 days, usually 26 or 28, def every month (~4 days). In caution, however, she did Day 3 testing. My FSH came back at 18, my E2 at 38. She told me that's the level where they tell patients they'll have to use DEs and to see an RE right away.

So we did (in LA), did the whole workup to see if I had any ovulation issues. My follicle count this past month was 8 -- 5 on the right, 3 on the left. RE said that was maybe 2-4 low for my age. There was a dominant one on the right that grew to 21mm. I started using OPKs to test, and low and behold, got my first positive OPK on D10...and then again for the next EIGHT days. It was really dark on D10, then got lighter, then dark again on D15. My RE thought I had false positives, then said that my D15 test was probably the accurate one.

So on D15 and D16 I felt that right-side pinching cramping. Weird thing is, since I've been off BCP I've NEVER felt that same pinching on the left side. I've felt it before a few times on the right.

We tested my progesterone on D15 and it came back showing I was in the periovulatory stage. Then tested again on D24; it was 12.7, which he said was good and showed I ovulated, and have no ovulatory issues. Then we got the DOR and "unexplained infertility" diagnosis.

I'm so frustrated, angry, sad, upset...you name it. Not being able to have our own baby is my worst-case scenario and I'm just feeling so powerless. A friend rec'd I get a second opinion from Hal Danzer, so we have an appt in a few weeks, and I also started acupuncture 4 weeks ago (Dr. Cai at Tao of Wellness), but is it really as hopeless as I've been told? Are there people out there who find treatment with an FSH of 18 and are successful (w/o DEs)?

Ugh, sorry for the long post...this sucks and I'm lost!

I joined the board in September of this year with the same feeling of "I'm freaking out!!" It seems like most of the people I've seen join have come in with the same fears, sadness, "how did I get here????" craziness. I have seen (and I'll try to track down where I found it) a spreadsheet of success stories for women both older than you and with much worse numbers. I also got a DE speech again today myself, but I'm trying to stay focused on those success stories. So, hang in there!! We are all here for you, and the ladies on this site have amazing amounts of information and are extremely supportive! This I know first hand

Hugs and good thoughts!
Jen
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Jen
Jen

November 30th, 2011, 5:24 am #4

I'm new to this forum, and sadly, more or less new to this entire situation. I'm completely freaking out about it all and could really use the support/advice from people who have been through this. If my next FSH test is 16 or above, our current RE won't treat us, def no IVF; it's basically, a "wait and hope for the best" situation. I'm starting to feel like there's no options for us, that we can't get pregnant and that it will be just impossible with an FSH so high. I can't even contemplate the idea of DEs right now.

My husband and I have been TTC for 5 months now, but I was alerted to my "exceedingly high" FSH of 18 this last month. I'm 35 (DH is 34). After having been on BCP for about 13 years (I stopped taking it 1 year ago), I started trying to use OPKs and for 4 months straight never once got a positive result. I would start testing on Day 7 and then use them for about 2 weeks. Needless to say, BFNs for those 4 months.

When I mentioned it to my OBGYN, she was concerned but not too much because I have regular periods, even right away after coming off BCP. They avg 26-32 days, usually 26 or 28, def every month (~4 days). In caution, however, she did Day 3 testing. My FSH came back at 18, my E2 at 38. She told me that's the level where they tell patients they'll have to use DEs and to see an RE right away.

So we did (in LA), did the whole workup to see if I had any ovulation issues. My follicle count this past month was 8 -- 5 on the right, 3 on the left. RE said that was maybe 2-4 low for my age. There was a dominant one on the right that grew to 21mm. I started using OPKs to test, and low and behold, got my first positive OPK on D10...and then again for the next EIGHT days. It was really dark on D10, then got lighter, then dark again on D15. My RE thought I had false positives, then said that my D15 test was probably the accurate one.

So on D15 and D16 I felt that right-side pinching cramping. Weird thing is, since I've been off BCP I've NEVER felt that same pinching on the left side. I've felt it before a few times on the right.

We tested my progesterone on D15 and it came back showing I was in the periovulatory stage. Then tested again on D24; it was 12.7, which he said was good and showed I ovulated, and have no ovulatory issues. Then we got the DOR and "unexplained infertility" diagnosis.

I'm so frustrated, angry, sad, upset...you name it. Not being able to have our own baby is my worst-case scenario and I'm just feeling so powerless. A friend rec'd I get a second opinion from Hal Danzer, so we have an appt in a few weeks, and I also started acupuncture 4 weeks ago (Dr. Cai at Tao of Wellness), but is it really as hopeless as I've been told? Are there people out there who find treatment with an FSH of 18 and are successful (w/o DEs)?

Ugh, sorry for the long post...this sucks and I'm lost!

Here's the site I looked at for success stats. I found it by going to the "New Pregnant with High FSH" board and within their board found a site "High FSH Info." On that site, down along the left hand side of the page, you'll come to Beth's success stats.

https://spreadsheets.google.com/pub?key ... nQE9_m9EYw

If you can't find it, let me know
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kf10
kf10

November 30th, 2011, 3:14 pm #5

Thanks for sending along those stats, I appreciate it. Taking a look, it's a little comforting to see some success stories, but I have to wonder how many more are they? Are we basically looking at like a 1 or 2% chance of getting pregnant? Those stats seems a little old. Any newer success stories with an 18 FSH?

I know I'm grasping at straws here -- feeling so dejected and, I admit, negative. I just keep reading over and over how the chances are so abysmal for someone like me. Am I overreacting???

I've always been so healthy, never had anything wrong with me. I eat a super clean, moderate diet, exercise, never smoked, barely drink alcohol, etc. I know 35 isn't young, but in this world, is that just as bad as closer to 40? Is it a bad sign that I only had 8 follicles (naturally)?

I just took a HPT. I guess I had some tiny sliver of hope it might have worked this month, since we monitored ovu so closely...BFN, again.
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Joined: September 29th, 2010, 9:51 pm

November 30th, 2011, 3:24 pm #6

Here's the site I looked at for success stats. I found it by going to the "New Pregnant with High FSH" board and within their board found a site "High FSH Info." On that site, down along the left hand side of the page, you'll come to Beth's success stats.

https://spreadsheets.google.com/pub?key ... nQE9_m9EYw

If you can't find it, let me know
Jen - I am glad you posted this! I had forgotten about this success chart. I have been on these boards since 2007 w/ one successful bfp/pg in Oct 2007. I just turned 35 this year (2011). I believe there is a grief cycle one goes through when hearing such devastating news - I feel this was true for myself. I would highly encourage you to do a search on both this and the preg despite high fsh board. It is my personal opinion that due to lack of insurance regulation and perhaps a lack of acknowledgement by the medical community that this is an actual disorder, that it has become a business rather than a course of treatment/action. Case and point, my first RE had an MBA in addition to his medical degree. And he was a fast talker.

I feel it's few and far between to get the kind of compassionate treatment one needs in this situation. Too often women (and men) leave feeling discouraged or downtrodden and sometimes feeling downright helpless. And there does not seem to be a one fix all solution. And is there a right RE out there? Cooper is less expensive but can be disorganized and hard to get in touch with. Cornell and New Hope can be rude, and CCRM can be really expensive. When I finally sat down to do a search on these boards in Aug of 2007 I saw there were a whole lot of protocals being used and quite a few success stories.

I actually just dug out my files and re-read the ones I printed that I took to my RE (#2). And really, RE#2 was not a high fsh establishment (subsequent visits there post baby without my original doctor has reaffirmed this). I think I came upon a doctor there that quite frankly took pity on me and threw me a bone. This was after I spent thousands of dollars on stims to get one almost stalled egg every time. So my RE and I read through some of these protocals I printed out and decided to do clomid days 5-9, followed by 75 iu of gonal f (or 75 iu - can't remember) plus iui after trigger (ovidrel). Now, this protocal may not be the right one for YOU. But if you read through the archives, you'll find there was a time 2003-2007 where a similar protocal was used. Sometimes called the European protocal or old school method. You'll find just as many people reporting on these boards that clomid ruined them. Which could be true as well; I too have had bad rounds with clomid. But one bad round of anything does not necessarily mean it doesn't work - same is true for gonal f, repronex, garlinex, bcp etc. So I encourage you to vent a little, cry a little, get motivated a little and comb through these archives. Remember if reproductive endocrinology is like a business then they too will change their protocal du jours based on all the other key players that go into running a business: pharmaceutical co, insurance etc . . .

And truly this message is not to promote any one protocal or method. I just used my clomid + gonal f as example - you just need one good egg at the right time or preparation meets opportunity. But if you search "clomid + gonal f" you'll get 21 pages of stories mostly prior to 2010. (And might I add that it was the cheapest cycle I've done thus far.)

Best of Luck to you anon! Hang in there!
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Joined: November 4th, 2011, 8:44 pm

November 30th, 2011, 3:35 pm #7

I'm new to this forum, and sadly, more or less new to this entire situation. I'm completely freaking out about it all and could really use the support/advice from people who have been through this. If my next FSH test is 16 or above, our current RE won't treat us, def no IVF; it's basically, a "wait and hope for the best" situation. I'm starting to feel like there's no options for us, that we can't get pregnant and that it will be just impossible with an FSH so high. I can't even contemplate the idea of DEs right now.

My husband and I have been TTC for 5 months now, but I was alerted to my "exceedingly high" FSH of 18 this last month. I'm 35 (DH is 34). After having been on BCP for about 13 years (I stopped taking it 1 year ago), I started trying to use OPKs and for 4 months straight never once got a positive result. I would start testing on Day 7 and then use them for about 2 weeks. Needless to say, BFNs for those 4 months.

When I mentioned it to my OBGYN, she was concerned but not too much because I have regular periods, even right away after coming off BCP. They avg 26-32 days, usually 26 or 28, def every month (~4 days). In caution, however, she did Day 3 testing. My FSH came back at 18, my E2 at 38. She told me that's the level where they tell patients they'll have to use DEs and to see an RE right away.

So we did (in LA), did the whole workup to see if I had any ovulation issues. My follicle count this past month was 8 -- 5 on the right, 3 on the left. RE said that was maybe 2-4 low for my age. There was a dominant one on the right that grew to 21mm. I started using OPKs to test, and low and behold, got my first positive OPK on D10...and then again for the next EIGHT days. It was really dark on D10, then got lighter, then dark again on D15. My RE thought I had false positives, then said that my D15 test was probably the accurate one.

So on D15 and D16 I felt that right-side pinching cramping. Weird thing is, since I've been off BCP I've NEVER felt that same pinching on the left side. I've felt it before a few times on the right.

We tested my progesterone on D15 and it came back showing I was in the periovulatory stage. Then tested again on D24; it was 12.7, which he said was good and showed I ovulated, and have no ovulatory issues. Then we got the DOR and "unexplained infertility" diagnosis.

I'm so frustrated, angry, sad, upset...you name it. Not being able to have our own baby is my worst-case scenario and I'm just feeling so powerless. A friend rec'd I get a second opinion from Hal Danzer, so we have an appt in a few weeks, and I also started acupuncture 4 weeks ago (Dr. Cai at Tao of Wellness), but is it really as hopeless as I've been told? Are there people out there who find treatment with an FSH of 18 and are successful (w/o DEs)?

Ugh, sorry for the long post...this sucks and I'm lost!

You need a new RE. Dr. Danzer is supposed to be great. We do roll calls on the New Pg board. Look to this for inspiration!
http://www.network54.com/Forum/264844/t ... regroup%29

You are NOT hopeless. I had success with SIRM STL after changing from a high fsh unfriendly clinic. So glad I didnt waste time getting to Dr. A
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Joined: November 4th, 2011, 8:44 pm

November 30th, 2011, 3:36 pm #8

Ooops meant Michelle
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BTDT
BTDT

November 30th, 2011, 3:40 pm #9

Thanks for sending along those stats, I appreciate it. Taking a look, it's a little comforting to see some success stories, but I have to wonder how many more are they? Are we basically looking at like a 1 or 2% chance of getting pregnant? Those stats seems a little old. Any newer success stories with an 18 FSH?

I know I'm grasping at straws here -- feeling so dejected and, I admit, negative. I just keep reading over and over how the chances are so abysmal for someone like me. Am I overreacting???

I've always been so healthy, never had anything wrong with me. I eat a super clean, moderate diet, exercise, never smoked, barely drink alcohol, etc. I know 35 isn't young, but in this world, is that just as bad as closer to 40? Is it a bad sign that I only had 8 follicles (naturally)?

I just took a HPT. I guess I had some tiny sliver of hope it might have worked this month, since we monitored ovu so closely...BFN, again.
8 resting follicles is not bad & 35 is not 40. Many doctors now agree that egg quality correlates with age, quantity correlates with fsh. High fsh = poor quality is old school unless you are also on the older end ttc, but at that stage, age is still correlating with quality.

Do not waste a bunch of time, but 35 is NOT the same as 40. There are a number of very good clinics in S. CA, assuming you are there from the Danzer ref. Consult with Danzer & maybe another clinic. Reading this board, you will think you need to see Check in NJ, but you don't. Just don't waste time getting a move on. You should have no problem finding a clinic in S. CA to treat you. Do a name search on this & the other active network 54 boards, probably over 40 & DE, & that should help you out with info. Dr. Kumar is another possibility. I know a few people who went to him & loved him.
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kf10
kf10

November 30th, 2011, 3:55 pm #10

Thanks for the words of encouragement. We are in Southern California (LA), but we will travel as far as we need to!!! Why do you say we don't "need" to see Check? I have seen his name a lot (as well as the guy from Cornell).

We'd most easily travel to Northern California or San Diego, but honestly, no place is off limits. We don't care! We're going to see Danzer in a few weeks, after I repeat my FSH and test AMH, but I really want (NEED to, really) to get a move on this and do whatever we need to do. I should also say that I started acupuncture a month ago with Dr. Cai at Tao of Wellness in Santa Monica.

Where else would you recommended for my situation (above)?
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