35 yrs old 49.2 FSH on CD 89 RE said no future luck

35 yrs old 49.2 FSH on CD 89 RE said no future luck

Joined: March 29th, 2012, 3:42 pm

March 29th, 2012, 3:55 pm #1

Hi Ladies
I've been lurking this week since the nurse told me that my FSH level was high after bloodwork on day 89 of my cycle. Ive been so moved by your support of each other and newbies.
A little history
I dont have regular cycles. In my 20s, they were around 60 days long. In my 30s, they've gone to twice a year.
In Dec after I turned 35, I started seeing an RE in Dallas and he said I probably had PCOS and put me on P to start my cycle. That worked. I went on clomid and had u/s to measure my progress. I ended up with one egg on each side with neither going above a 5. Then I never started a new cycle. I took P on CD 45 and still no AF.
On Tuesday - cd 89 - they drew blood and measured my FSH for the first time. It was 49.2.
The RE met with me this morning and told me there was no hope since my mom went thru menopause at 39 and I needed to get donor eggs. I am so sad that I don't know how to react.
So that's my story. I don't know if I even have a question but I'm in the parking lot crying and I just wanted to tell someone who Would understand how sad I am.
Thanks for reading.
Sadie
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Mrs. McIrish
Mrs. McIrish

March 29th, 2012, 4:00 pm #2

OH Sadie,
You have come to the right place. First off, an FSH reading is only helpful on CD2 or CD3. Of course it is tough to get that reading if you don't have cycles. Lots of RE's don't want to treat high FSH'ers as we bring down their stats since we have less success than others getting PG. But being DOR/POF doesn't mean you can't get pg. Did you have an AMH test (anti mullerian hormone). It can be drawn any day of the month and is another indication of ovarian reserve. Lots of us travel to high-FSH friendly REs as they can be tough to find locally. I think you need more provera to bring on AF and then get the FSH re-tested on CD2 or CD3 to know what you are dealing with.
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Houston
Houston

March 29th, 2012, 9:33 pm #3

Hi Ladies
I've been lurking this week since the nurse told me that my FSH level was high after bloodwork on day 89 of my cycle. Ive been so moved by your support of each other and newbies.
A little history
I dont have regular cycles. In my 20s, they were around 60 days long. In my 30s, they've gone to twice a year.
In Dec after I turned 35, I started seeing an RE in Dallas and he said I probably had PCOS and put me on P to start my cycle. That worked. I went on clomid and had u/s to measure my progress. I ended up with one egg on each side with neither going above a 5. Then I never started a new cycle. I took P on CD 45 and still no AF.
On Tuesday - cd 89 - they drew blood and measured my FSH for the first time. It was 49.2.
The RE met with me this morning and told me there was no hope since my mom went thru menopause at 39 and I needed to get donor eggs. I am so sad that I don't know how to react.
So that's my story. I don't know if I even have a question but I'm in the parking lot crying and I just wanted to tell someone who Would understand how sad I am.
Thanks for reading.
Sadie
I agree with Mrs. McIrish. I also think you should get an AMH test done. It is more useful than FSH and can be done anytime in your cycle. However, really the only way to know how you would respond, is to try stimulation drugs. You are still young, so I don't think you are out of the game.
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Laura
Laura

March 30th, 2012, 7:11 pm #4

Hi Ladies
I've been lurking this week since the nurse told me that my FSH level was high after bloodwork on day 89 of my cycle. Ive been so moved by your support of each other and newbies.
A little history
I dont have regular cycles. In my 20s, they were around 60 days long. In my 30s, they've gone to twice a year.
In Dec after I turned 35, I started seeing an RE in Dallas and he said I probably had PCOS and put me on P to start my cycle. That worked. I went on clomid and had u/s to measure my progress. I ended up with one egg on each side with neither going above a 5. Then I never started a new cycle. I took P on CD 45 and still no AF.
On Tuesday - cd 89 - they drew blood and measured my FSH for the first time. It was 49.2.
The RE met with me this morning and told me there was no hope since my mom went thru menopause at 39 and I needed to get donor eggs. I am so sad that I don't know how to react.
So that's my story. I don't know if I even have a question but I'm in the parking lot crying and I just wanted to tell someone who Would understand how sad I am.
Thanks for reading.
Sadie
I know this is hard, and it sucks to hear conflicting information to your Dr from a non-Dr, but your Dr. is just wrong. Here are the problems with what your RE did:

1. They took your FSH on a day other than CD3. Any GOOD re should know that the number simply doesn't matter if it's not a CD2-4 reading. Of course it's going to be very high if you didn't ovulate because your body is TRYING to ovulate. So this test was pointless and it did nothing other than scare you to death.

2. He told you there was no hope based on this one pointless test. Wrong. There is hope for you to get pg with OE. It may take some time and some work but you probably can. IF is a business, and RE's have medical training and licenses, but most are not really good for actual medical problems. Find an RE who is interested in helping you restore your cycles FIRST.

3. He gave you P (provera?) to make your AF come. Well, this will only work if you have a lining to speak of, which if you didn't ovulate, you probably didn't have. So all it does is scare you more that it's "not working".

Take a deep breath. Here's what happened to me:

I didn't get AF for 3 months. Had every menopausal symptom in the book. I saw an OB and she tested FSH and E2 (estradiol). It must have been CD90+, I wasn't counting. FSH was 70. She told me I was in menopause (at 29) and that she could try clomid, but it probably wouldn't work. I went for a second opinion. FSH was 35 (CD100-ish). She said the same thing. I went to an endocrinologist (I had 1 brief AF between the two) and he said, let's see if you get AF again and go to the lab on CD3. I did and my FSH was 10. He said "you're fine". I had 2 more AFs, lasting 18-35 days. I went to an RE and CD3 FSH was 20. He said, "well, I think you are not 'fine' but you are not in menopause bc your FSH is going up and down, and even tested in the normal range at one point. when you're in M, it just stays high." I did the following:

1. estradiol supplement, 1 mg, 1x daily for 2 weeks
2. Added b-complex vitamin 1x daily (12 h after taking prenatals).
3. Drank red raspberry leaf tea 2-3x daily

I ovulated, on time (CD15) and got pg that cycle. I miscarried, but it was due to a rare case of monoamniotic twinning, which my OB said is just really rare and most cases don't survive. she said it is not related to the hormonal problems I had before.

In your case I would find an RE who suggests something along the lines of estradiol supplementation to build your lining, followed by provera to bring on AF. THEN testing your CD3 FSH, LH, and E2. If E2 is low, then putting you back on estradiol for 2 weeks to see if you grow any follies. In my case, my E2 had dropped so low that my body couldn't support any growing follies, which sounds like it could be what you have since you had a few small follies that disappeared before ovulating.

So, good luck, and I hope this helps.
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Joined: March 29th, 2012, 3:42 pm

March 30th, 2012, 8:45 pm #5

OH Sadie,
You have come to the right place. First off, an FSH reading is only helpful on CD2 or CD3. Of course it is tough to get that reading if you don't have cycles. Lots of RE's don't want to treat high FSH'ers as we bring down their stats since we have less success than others getting PG. But being DOR/POF doesn't mean you can't get pg. Did you have an AMH test (anti mullerian hormone). It can be drawn any day of the month and is another indication of ovarian reserve. Lots of us travel to high-FSH friendly REs as they can be tough to find locally. I think you need more provera to bring on AF and then get the FSH re-tested on CD2 or CD3 to know what you are dealing with.
I really appreciate your virtual support. I really needed to read this yesterday. Though I didn't respond, I felt better after reading it. It helped me realize that Dr. Douglas' comments were more about him and his desire to work with certain issues, than about me. I spent the evening trying to regroup and move forward.

I made an appointment for Monday with my regular OBGYN. I called and told the nurse that I needed to have blood work done there, because the RE they sent me to didnt want to see my anymore. She told me they would get it taken care of. I also made an appt for Wednesday at a different local RE. I'm hoping that one of them will give me a protocol to follow, other than just sit and watch your last eggs die. LOL

I did not have my AMH tested. I will add that to the list for Monday. Thank you so much for your suggestions.

If all else fails, I am four hours away from Houston. I know there were two FSH-friendly RE's listed there.
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Joined: March 29th, 2012, 3:42 pm

March 30th, 2012, 8:46 pm #6

I agree with Mrs. McIrish. I also think you should get an AMH test done. It is more useful than FSH and can be done anytime in your cycle. However, really the only way to know how you would respond, is to try stimulation drugs. You are still young, so I don't think you are out of the game.
Thank you for you kind words, Houston. I still have a few good years left in me, right? LOL
Do you live in Houston? I read that there were two FSH-friendly RE's there.
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Joined: March 29th, 2012, 3:42 pm

March 30th, 2012, 8:52 pm #7

I know this is hard, and it sucks to hear conflicting information to your Dr from a non-Dr, but your Dr. is just wrong. Here are the problems with what your RE did:

1. They took your FSH on a day other than CD3. Any GOOD re should know that the number simply doesn't matter if it's not a CD2-4 reading. Of course it's going to be very high if you didn't ovulate because your body is TRYING to ovulate. So this test was pointless and it did nothing other than scare you to death.

2. He told you there was no hope based on this one pointless test. Wrong. There is hope for you to get pg with OE. It may take some time and some work but you probably can. IF is a business, and RE's have medical training and licenses, but most are not really good for actual medical problems. Find an RE who is interested in helping you restore your cycles FIRST.

3. He gave you P (provera?) to make your AF come. Well, this will only work if you have a lining to speak of, which if you didn't ovulate, you probably didn't have. So all it does is scare you more that it's "not working".

Take a deep breath. Here's what happened to me:

I didn't get AF for 3 months. Had every menopausal symptom in the book. I saw an OB and she tested FSH and E2 (estradiol). It must have been CD90+, I wasn't counting. FSH was 70. She told me I was in menopause (at 29) and that she could try clomid, but it probably wouldn't work. I went for a second opinion. FSH was 35 (CD100-ish). She said the same thing. I went to an endocrinologist (I had 1 brief AF between the two) and he said, let's see if you get AF again and go to the lab on CD3. I did and my FSH was 10. He said "you're fine". I had 2 more AFs, lasting 18-35 days. I went to an RE and CD3 FSH was 20. He said, "well, I think you are not 'fine' but you are not in menopause bc your FSH is going up and down, and even tested in the normal range at one point. when you're in M, it just stays high." I did the following:

1. estradiol supplement, 1 mg, 1x daily for 2 weeks
2. Added b-complex vitamin 1x daily (12 h after taking prenatals).
3. Drank red raspberry leaf tea 2-3x daily

I ovulated, on time (CD15) and got pg that cycle. I miscarried, but it was due to a rare case of monoamniotic twinning, which my OB said is just really rare and most cases don't survive. she said it is not related to the hormonal problems I had before.

In your case I would find an RE who suggests something along the lines of estradiol supplementation to build your lining, followed by provera to bring on AF. THEN testing your CD3 FSH, LH, and E2. If E2 is low, then putting you back on estradiol for 2 weeks to see if you grow any follies. In my case, my E2 had dropped so low that my body couldn't support any growing follies, which sounds like it could be what you have since you had a few small follies that disappeared before ovulating.

So, good luck, and I hope this helps.
Thank you so much for all of your suggestions and for sharing your protocol. You

I appreciate the conflicting viewpoint. I work best when I am able to accumulate information, judge how it would apply to me, ask some questions and make a plan. I had a whole worksheet lined up for my appt yesterday that he told me was useless to fill out. Mean ole man. =(

Yes, I did use Provera twice since December 2011. The first time, it took 13 days to work after the last pill and I had a 3 day cycle. It was my first cycle since April 2011. The second round of P was in February and it never worked.

What helped you regulate your cycles finally? Was it a medication?

Also, Laura, I'm incredibly sorry for your loss. I hope that it never happens to you again.
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Joined: March 29th, 2012, 3:42 pm

March 30th, 2012, 8:56 pm #8

Hi Ladies
I've been lurking this week since the nurse told me that my FSH level was high after bloodwork on day 89 of my cycle. Ive been so moved by your support of each other and newbies.
A little history
I dont have regular cycles. In my 20s, they were around 60 days long. In my 30s, they've gone to twice a year.
In Dec after I turned 35, I started seeing an RE in Dallas and he said I probably had PCOS and put me on P to start my cycle. That worked. I went on clomid and had u/s to measure my progress. I ended up with one egg on each side with neither going above a 5. Then I never started a new cycle. I took P on CD 45 and still no AF.
On Tuesday - cd 89 - they drew blood and measured my FSH for the first time. It was 49.2.
The RE met with me this morning and told me there was no hope since my mom went thru menopause at 39 and I needed to get donor eggs. I am so sad that I don't know how to react.
So that's my story. I don't know if I even have a question but I'm in the parking lot crying and I just wanted to tell someone who Would understand how sad I am.
Thanks for reading.
Sadie
I'm really grateful for this forum and that I was able to say something that was really upsetting me in a confidential place. Thank you for reading it.

I have a plan in my mind now of what I'm going to "expect" from the OB and the new RE next week. I called the nurses before I confirmed the appts to make sure I wouldn't be wasting my time. I hope it works out. I'll update you next week.

Thanks again for listening and the wealth of information! I know that your struggle to become a mother has been difficult and laced with sorrow, but what you have learned and chosen to share is blessing so many of us. You'll make wonderful mothers.

Have a fabulous weekend.
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Erin
Erin

March 31st, 2012, 12:37 am #9

Just to add to the good advice you've already gotten, I think it's fine to get an AMH but even if it's very low, don't be discouraged. My AMH was as low as the test goes ("less than 0.1") and I have an AFC of 8 and got 5 eggs and 4 embryos (2 usable) in my last cycle, so a bad AMH is not the end of the world. I agree with the others that you need CD2-3 labs and an AFC (antral follicle count) would be useful as well. I think it's hard to know how you'll respond to meds until you try, so regardless of the numbers, I think there's still hope! Wishing you lots of good luck.
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Alli
Alli

March 31st, 2012, 10:53 pm #10

Thank you for you kind words, Houston. I still have a few good years left in me, right? LOL
Do you live in Houston? I read that there were two FSH-friendly RE's there.
Helped Jamie with her success!!
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