New here and need encouragement

New here and need encouragement

Joined: December 28th, 2011, 1:28 pm

December 28th, 2011, 2:01 pm #1

Hello!
I am here not for myself but for my twin sister. She does not like postng on message boards... but I find that they can offer a lot of support and I want to be able to pass along any positive information that I can.

About three weeks ago my sister called my in hysterics because she had just received a call from her RE that her FSH was 20 and her AMH was 0.2. She had no indication that this diagnosis was coming. She was getting a positive OPK every month and her cycles seemed regular. She is 32 years old.

Since then she and I both have been obsessively searching the Internet looking for some hope. She just got married a little over a year ago and she thought having children would be realitivly easy.

She is determined to do everything in her power to improve her sitatin. She just started accupuncture and is now taking DHEA.

Have any of you had success with numbers like these?
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bigboy
bigboy

December 28th, 2011, 3:16 pm #2

there are several examples of success on this board with those types of numbers, myself being one of them.
...one thing that you should do for yourself is get yourself checked out as well....this stuff is largely hereditary, but not always.
im 32, and my AMH was .34 in may (when i was 31 actually) then it was checked again at the end of july, and it was .22. i was also getting + OPKs....usually ovulating on day 14 and having a 13-14 day luteal phase. so my cycles were roughly 27-29 days...not even considered "short". i had no idea my diagnosis was coming either, it was very shocking at first, especially bc of my age.
this board is a great resource for all things related.
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Laura
Laura

December 28th, 2011, 4:18 pm #3

Hello!
I am here not for myself but for my twin sister. She does not like postng on message boards... but I find that they can offer a lot of support and I want to be able to pass along any positive information that I can.

About three weeks ago my sister called my in hysterics because she had just received a call from her RE that her FSH was 20 and her AMH was 0.2. She had no indication that this diagnosis was coming. She was getting a positive OPK every month and her cycles seemed regular. She is 32 years old.

Since then she and I both have been obsessively searching the Internet looking for some hope. She just got married a little over a year ago and she thought having children would be realitivly easy.

She is determined to do everything in her power to improve her sitatin. She just started accupuncture and is now taking DHEA.

Have any of you had success with numbers like these?
and most of the information on the internet makes the panic worse. I think the most helpful thing I learned from this board is that FSH is an indicator of remaining egg QUANTITY, not quality. Many REs will tell women with high FSH that they need to go to donor egg (DE) right away if they want to get pg, but it's just not true. What IS true is that IF treatment is a business. REs use FSH and AMH numbers to pick and choose patients to keep their success rates high, so they get more clients (not patients...clients) through their doors. So your sister should keep looking until she finds an RE who will treat her, aka a "high fsh-friendly" RE.

There's a lot of information on this board; check the "New Pregnant" board...it gives us all reasons to hope.

Laura
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Cee
Cee

December 28th, 2011, 4:23 pm #4

Hello!
I am here not for myself but for my twin sister. She does not like postng on message boards... but I find that they can offer a lot of support and I want to be able to pass along any positive information that I can.

About three weeks ago my sister called my in hysterics because she had just received a call from her RE that her FSH was 20 and her AMH was 0.2. She had no indication that this diagnosis was coming. She was getting a positive OPK every month and her cycles seemed regular. She is 32 years old.

Since then she and I both have been obsessively searching the Internet looking for some hope. She just got married a little over a year ago and she thought having children would be realitivly easy.

She is determined to do everything in her power to improve her sitatin. She just started accupuncture and is now taking DHEA.

Have any of you had success with numbers like these?
Most of us here on this board are still trying, but there is a link on the upper right for a pregnant despite high FSH board where all the success stories are. Your sister sounds like me, the day after I turned 32 I found out about my high FSH, also 20 at the time. Although I haven't found success yet, there are many that have come and gone on this board that have been able to get pregnant with similar numbers. Best of luck to your sister!
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Joined: December 17th, 2011, 6:32 am

December 28th, 2011, 4:26 pm #5

Hello!
I am here not for myself but for my twin sister. She does not like postng on message boards... but I find that they can offer a lot of support and I want to be able to pass along any positive information that I can.

About three weeks ago my sister called my in hysterics because she had just received a call from her RE that her FSH was 20 and her AMH was 0.2. She had no indication that this diagnosis was coming. She was getting a positive OPK every month and her cycles seemed regular. She is 32 years old.

Since then she and I both have been obsessively searching the Internet looking for some hope. She just got married a little over a year ago and she thought having children would be realitivly easy.

She is determined to do everything in her power to improve her sitatin. She just started accupuncture and is now taking DHEA.

Have any of you had success with numbers like these?
Have u done this tests as well. U should do it as well, and if ur healthy as a very very last resort u can donate egg to her. What's better than a twin sis donating egg...its like her own egg specially if ur identical. That being said, I don't mean she can't do it on her own. Who is her RE? And where do u leave? her #s rnt bad and she is young. So there still is hope. Consider seeing Dr check in NJ. Trust me its worthed. I am in CA and I am doing out of town monitoring with him. Red it is a 7 HR flight if I need to do IVF, but u wasted 9 month with local RE who didn't help much. The most important thing is to find a high fsh friendly RE. Ask her to join this group. I can swear that many woman who found success, was because if help and support in this group.

Please excuse any typos, typed from my cell phone!!!

IVF #1...no fertilization
IVF #2...E2 drop, canceled
IVF #3...E2 drop, canceled
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AJ
AJ

December 28th, 2011, 5:43 pm #6

Hello!
I am here not for myself but for my twin sister. She does not like postng on message boards... but I find that they can offer a lot of support and I want to be able to pass along any positive information that I can.

About three weeks ago my sister called my in hysterics because she had just received a call from her RE that her FSH was 20 and her AMH was 0.2. She had no indication that this diagnosis was coming. She was getting a positive OPK every month and her cycles seemed regular. She is 32 years old.

Since then she and I both have been obsessively searching the Internet looking for some hope. She just got married a little over a year ago and she thought having children would be realitivly easy.

She is determined to do everything in her power to improve her sitatin. She just started accupuncture and is now taking DHEA.

Have any of you had success with numbers like these?
on everything, especially with the advice to get yourself checked out. Even if you don't want children right now having this knowledge will give you an advantage to make decisions for your future.

And FWIW, I didn't know my FSH at the time, but my AMH was 0.06 when I conceived my daughter naturally a little over 3 yrs ago. It's definitely a matter of quality over quantity.

Good luck to you both!
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Sara H
Sara H

December 28th, 2011, 6:13 pm #7

Hello!
I am here not for myself but for my twin sister. She does not like postng on message boards... but I find that they can offer a lot of support and I want to be able to pass along any positive information that I can.

About three weeks ago my sister called my in hysterics because she had just received a call from her RE that her FSH was 20 and her AMH was 0.2. She had no indication that this diagnosis was coming. She was getting a positive OPK every month and her cycles seemed regular. She is 32 years old.

Since then she and I both have been obsessively searching the Internet looking for some hope. She just got married a little over a year ago and she thought having children would be realitivly easy.

She is determined to do everything in her power to improve her sitatin. She just started accupuncture and is now taking DHEA.

Have any of you had success with numbers like these?
Nice of you, and a good idea, to wade though all the internet crude for her!

OK:

Yes, you should get checked but there are so many possible factors don't work yourself up over it yet, it's just a good idea!

(I say "you" instead of 'she' in this a lot but I mean your sister, or "you" in the greater sense!)

Was she on birth control pills? How long has she been off? These can really mess you up, for me I needed my system "reset" with hormone help before I could find success.

DHEA: on the main page you will see, on the side above the start of the board, a "search" button. Put in DHEA and "date" and look up what is there. It can really mess with your heart but some people feel it has helped... just make sure she has been tested and IS DEFICIENT for it, if not get off it, I say! It's not worth the heart risks!

As others have said, tell us the area of the county you live in and someone might have a Dr. suggestion. You really need to work with someone who KNOWS high FSH, not just "how is willing to work with you." Some clinic will let you cycle when they feel there is no hope just to make you feel better... and to make some cash... then move you onto soemthing else. You need someone who had had repeated success helping ladies like us!

Tell her not to worry about the AMH count, really, most of our Dr.s don't count it at all. It can really be a red herring with us. Age is MUCH more important and you both have that on your side!

And, just so you are aware: I am 37 and had a highest FSH of 58... and am currently 5.5 weeks PG. I, too, had regular cycles and good OPKs.

Hang in there, tell her not to go too nuts and there is HOPE!
Will it be a hard road, probably. But there is hope.
Hugs to you both!
Sara H

The Welcome Post:
I did want to give you a "Welcome post"

(PS: Anyone can feel free to post this to anyone new that it might be helpful for!)

Good luck to you!
Sara H

_________________________________


Hello!

I was 'new' here last September and put together some hints, beyond the guild lines listed on the main page, that I think are helpful! Probably stuff you know but I hope it helps!

Welcome!
Sara H.


1) Use the "Search" on this site when you have a question (remember to push "date" so they are in order, recent to last, since you can sometimes get answers from 10 years ago!) Often I have my questions answered right there with no need to post!

2) We use a LOT of acronyms here that are hard to get your head around sometimes if you are new to it! Here are 2 sources: ( I have them book marked on my computer and I still use when I have questions!

http://www.ivfconnections.com/forums/co ... 2781df2f22

http://www.fertilityplus.org/faq/acronyms.


3) You will notice in some posts that people are very careful to say in the message title when things involving children and pregnancy are mentioned. So, if at some point you are mentioning pregnancy (hopefully someday yours!) or whatever just put your topic and (PG mentioned) in the title, if you have a child and mention that please put (Child mentioned) so if someone is having a bad day and knows they just can't read about it today they are forewarned! Other "disclaimers" include (DE Mentioned) for donor egg, (Adopt Mentioned) for adoption, (M/C Mentioned) for miscarriage or (TMI!) when something is graphic or very very personal! Basically, anything that someone might rather be warned about before reading. Although we all share one thing in common, we all come from varied backgrounds so we try to be sensitive to that as much as possible.

4) We tend to be a more fact-based board so sometimes it's not all rainbows and hopeful news. We are totally supportive but also more factual/scientific than a lot of other boards. But, there is a LOT of knowledge here that can be so very helpful! Just remember, we are only speaking from our own experience and not giving medical advice. You know the old adage: You get what you paid for! Each person is very different, what works for one may well not, work for another, but it can be very helpful to get you on the right track.

5) When you need inspiration go peek at the "Pregnant...." board! You can cruise over to check on "friends" who have made it there or when you are feeling down... it's rather joyful to see ladies who have found success!

Good luck!
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Joined: December 28th, 2011, 1:28 pm

December 28th, 2011, 7:20 pm #8

Thank you all so much for responding! My sister does live in Denver so they are fortunate that they are able to receive treatment at CCRM. I have heard they are a good place.

My sister also had a meeting with her Dr today and they told her that they are going to have her take DHEA, go to acupuncture... for 3 months before they do any further testing. She did find out that her thyroid isn't functioning properly and they did a test for Fragile X. That test made her worry. Have any of you had a test for Fragile X done?

We are identical twins and if it does turn out that I am ok I would certainly serve as an egg donor for her if it came to that. I wouldn't think twice about it. I am, however, a little bit concerned that I might share her same diagnosis. I have been experiencing similar symptoms lately but I am too afraid to officially find out.

Thanks again for your support and I will be sure to keep you updated.


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AJ
AJ

December 28th, 2011, 7:34 pm #9

I live in the area- let me know if your sis wants a rec for an acupuncturist. I have a fantastic one that specializes in IF.
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anna
anna

December 28th, 2011, 8:02 pm #10

Thank you all so much for responding! My sister does live in Denver so they are fortunate that they are able to receive treatment at CCRM. I have heard they are a good place.

My sister also had a meeting with her Dr today and they told her that they are going to have her take DHEA, go to acupuncture... for 3 months before they do any further testing. She did find out that her thyroid isn't functioning properly and they did a test for Fragile X. That test made her worry. Have any of you had a test for Fragile X done?

We are identical twins and if it does turn out that I am ok I would certainly serve as an egg donor for her if it came to that. I wouldn't think twice about it. I am, however, a little bit concerned that I might share her same diagnosis. I have been experiencing similar symptoms lately but I am too afraid to officially find out.

Thanks again for your support and I will be sure to keep you updated.

does she have fertility insurance?? I hate to say this, but if she doesn¡¦t i wouldn¡¦t recommend spending 30K at CCCRM for 1 IVF. why?? from my experience if high FSHers find success it¡¦s not very common to be at the first cycle. we just have to roll the dice couple of times. Has there been people to find it at their first try? yes. Is it common for high FSHers? No

I personally did 3 IVfs. and 2 were canceled. I have no fertility insurance and I often get donated med so up to know i spent about $25k. if I were to do that at CCRM it would be out of pocket by $60k+++. there is no question that they are the best of the best for regular woman. but I am not sure if I would call it the best place for high FSHEr people. they have great lab and the best success rate in the country. If I had insurance for 6 IVF or if I were a millionaire (I wish, LOL) I would go to CCRM. Just wanted to warn you about that. One more advice about that: ask your sis about her AFC. If her AFC is 10+ then it¡¦s worth it to go to CCRM cause she might find success at first try. I remember once someone here with high FSH had AFC of 15 which is great. Mine is 4 ¼

I also have thyroid problem. Does she have endometriosis? Any cyst on ovary? Also the good news is that the untreated thyroid problem could prevent you from getting pregnant so if know she starts taking thyroid med, her odds automatically increase º

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