High FSH-the beginnings

Well, that's what got someone to my blog today and I don't want them to think they should base whether or not their can be successes with high fsh just based on little ol' me.

If you need some hope right away, go check out the Over 40 Stats Only (it's on the left hand side of the page when you click on the link).

When you get diagnosed with high FSH it feels like the whole world crashes down upon you. I remember when it happened to me.

See, the mister and I got married after many happy years of living in sin together because we wanted to start a family. Yep, we were finally ready and we (ok, really the Royal We for the next part) were incredibly arrogant. It was going to happen on our honeymoon.

So we went to an island paradise for 3 long and loverly weeks. We came home with tan lines, sarongs, tons of pics but no baby on board.

Then I started charting. I read the book, got the thermometer and even found a website where I could do it all online. Too cool! I joined some boards with people that were just starting out ttc. I even joined some for oldsters like me. And we tried. And tried.

There were problems with my charts. Short cycles and really short luteal phases. Like 8-10 day luteal phases. That's never a good thing. Then I tried supplements and tried to get into see my ob/gyn. She was super nice. I was lucky because she looked at my charts and said we should run bw and start to rule things out. See, I was 'old' back then at 37 and she didn't want to screw around.

I didn't hear back from the bw for a while. I remember calling the ob/gyn office and getting a nurse on the line. Must have been a pretty inexperienced one because she told me my doc was on vacation and then she just read me the results. I wrote the numbers down and consulted a higher power to help me interpret them. The internet.

Well, let me just say if it's Friday afternoon and you're at work without much to do except research lab results, you are very thankful that you have a lot of space and not a lot of co-workers. You can cry a lot and no one hears you.

I found a lot of very scary information at first. A lot of sites that said things like "less than 1% chance of pregnancy." It was a long time until I found anything even remotely hopeful.

Then I found the High FSH message boards. They were like crack for me for a very long time. There was hope there. And supportive women. And babies. Ok, not everyone had babies but way more than 1%.

So I lurked. I read. I cried. It took me a very long time to post there but I met some incredible women there.

I read that hopeful book by the woman who had an FSH of 41 at 41. I thought about taking wheatgrass. I researched EVERYTHING.

I made an appointment with an RE who came very highly recommended by a co-worker of the misters. I made the fatal error of not asking if they were high fsh friendly. If you have high FSH, you might do this once, but trust me you never do it again.

We waited a few weeks for our appointment. I knew what the internet claimed. The mister didn't believe me. They took several hundred dollars from us.

Then they told us they couldn't...I mean WOULDN'T do anything. No drugs. No iuis. No ivfs. They'd be happy to take a lot more money and only do ultrasounds. You see, what they didn't say is they care about their statistics. Tremendously. They think it will help not to treat high fsh women. Turns out this particular clinic needs all the help they can get (they just aren't very good as it turns out).

Technically I suppose we got off easy. They didn't quote 1%----they said we had about a 5% chance of getting pregnant with our own gametes. The mister took this really, really hard. It finally clicked it.

It just pissed me off. So I started researching other clinics. I'm lucky enough to live in Northern California where we have lots and lots of REs. We went to a pig pickin' (if you know what that means you've probably been to my home state) and an acquaintance shared her RE and her acupucturist with us.

I was leery so I wrote the clinic she mentionned. Sent in a cold email, if you will. I was amazed when I got a personal email from the head of the clinic AND a phone call from the IVF director. They both wanted to make sure my questions got answered. They both said of course they'd treat me and would never turn me away. That clinched it.

I decided to be pretty open with my fertility challenges. It's worked pretty well for me. I remember shortly after my diagnosis I was talking with someone on the phone. She is a member of the volunteer club I belong to and we were trying to arrange a meeting. I don't think I'd ever talked with her before. She was in the middle of a pregnancy and for some reason I just told her we were having problems.

She amazed me. Told me to hold on. Shut her office door and said she'd had problems and I should never give up. Turns out she was also diagnosed with high FSH! She totally got it and gave me lots of resources and support. She also told me she'd gotten successful with donor eggs and it was the best thing she'd ever done.

Then I went to a local gathering a couple of month's later at the Maven's house. There were 6 of us there that September day. It's been about 1.5 years and now the other 5 have all had babies: one through ivf, one naturally, one adopted, one had twins through donor eggs, and the other twins through donor embryos. It was such a relief to know there were others like me and there was real hope. I'm still playing catch up but I know that I'll get there.

Maven tried for many years and was very active in the boards. She put together an incredible success list that's still being maintained. I'll include the link later on in this post and add it to my lists. It's truly amazing to see all the women with high fsh--some ABOVE 100--and all the kid's they've had. Maven once told me she felt like about half of us got pregnant whether naturally, medicated or ivf. I know this might not be the best sample but it's a lot more than most docs would let you believe.

I remember a few months after I got diagnosed, one of my friends in wedding land got the same sentence. She was lucky--Garden State Girl--and lived right down the highway from a clinic that does wonders for us. I know she felt as hopeless as I did, but I told her to go straight to Dr. High FSH. She went straight there and has a bouncing baby boy to show from her very first cycle there.

Now, as you know, I'm still trying. My local doc believes that high FSH is just an indicator of low ovarian reserve--but not necessarily poor egg quality. He's been supportive, especially through my ectopic (just bad luck...not fsh related) and wants nothing more than to see me pregnant. He's an infertilty patient himself--built his own family through donor eggs--and that means a lot to me as well.

I spent some time being a Garden State Chick myself back last fall. I met a woman in the clinic who told me the most amazing story. I thought she was just an urban legend but she's real. Her FSH was well over 100 and she tried many cycles. In something like 4 years of trying she only ever got one follicle. Which had one egg. Which turned into one embie. And you probably know where this is going but that embie is now her preschool aged daughter. It really does only take one.

I stopped by Maven's house today. That first lunch meeting seems like such a long time ago. It was nice to catch up. Even nicer to see her successes--they're getting big and so smiley and playful now. Her house is full of baby gear. She told me it would be my turn next and I believe her. It doesn't matter so much how you get there, just that you do get there.

Comments

[chris]

Pig pickin'? You must be from North Carolina, right?

[Dead Bug]

What a lovely and hopeful post, Millie!

--Bugs

[Bee]

Hi Millie,

Loved this post. Now maybe you're like the duck on the lake -- serenely sailing along above water, paddling like mad underneath -- but the words that came to mind as I read your words were: "Calm persistence." I do believe you'll get there in the end. I'm looking forward to reading about it.

Kiss T's babies for me if you see 'em soon. :D

Bee

[wessel]

What a great post, Millie! So positive and upbeat and strong, and, damnit, determined!

I'm ready to go for the extremely expensive "donated" golden egg, though, because I'm tired of waiting on my miracle. But there is a little part of me that thinks what if? What if I get pregnant spontaneously after having a DE baby? Hey, it HAPPENS. Maybe my body just needs to be deluded into believing that it is still young and fertile (by the DE pregnancy) and then it will pop out a genetic baby for me. In any event, I could sure use a real live baby to love while waiting for my miracle. Sigh.

We will get there, girlfriend, some how, some way, some day.

[y]

Just popped in to say thanks so much for the lovely note you left on my fledling blog; a friend from some message boards I run recommended your blog to me a couple of weeks ago, and I've been addicted ever since.

[InSpring]

I'm 41 too, thanks for the encouraging post and the web site - any chance you could email the name of the Garden State clinic - I'm near there. Thanks!

[Emily]

I remember my diagnosis too, just like it was yesterday. I was the one with the lowest 'high' FSH of the group and still the only one that doesn't have kids. All the others have one or are working on more. I know it's got to be more than FSH because my highest was '9.8', yet, nothing. I see hits on my blog too for women who look like they've been newly diagnosed by the search string they use to find me.

Lovely entry Millie.

xxoo,

[Susanne]

Does anyone know of a good RE that treats high fsh and older woman over 40 in the detroit, mi area? My fsh has bounced around a lot went from 2.5 a few months ago to 23 on 3day and 70 on day 29th with a delayed period after a lap, anyone experienced this?

[Lee]

I'm a 43 year old woman from Boston who has never been pregnant, never taken birth control & now ready to have children. I was married last May and together for 3 years and guess what? We're NOT pregnant yet. I have been to a fertility clinic and was told I had a level 14.5 FSH. My husband and I have been told this is "high." But when I read that women have high fsh in the 20s, 30s and now 100...that is unbelievable to think my level is considered high. Help me with the answer to this question PLEASE! WHAT IS HIGH?

[Lee]

I'm a 43 year old woman from Boston who has never been pregnant, never taken birth control & now ready to have children. I was married last May and together for 3 years and guess what? We're NOT pregnant yet. I have been to a fertility clinic and was told I had a level 14.5 FSH. My husband and I have been told this is "high." But when I read that women have high fsh in the 20s, 30s and now 100...that is unbelievable to think my level is considered high. Help me with the answer to this question PLEASE! WHAT IS HIGH?

[dorothy]

I don't mean to be completely stupid...but what is an RE?
I am also 43 and am trying to get pregnant.
I was diagnosed with a fsh of 43...and my doctor told me to through in the towel and adopt. This is the first time in my life my period is 49 days late? I have had no per menop symptoms...
I made my appt with a fertility doctor and a chinese herbal doctor to lower my fsh...but not even sure if my period will ever come back? I cried all nigh when I found out the news,.

[Boshra]

Dear Sir,
Hoping to give me minutes of your precious time to advise me ,

I am 38 years old I start to do IVF as my husband semen count 12,000,000/ML

I took 5 meryonal + 1 decapeptil 1gm per day for 10 days but the result I have only 2 egg and small. the next month I missed the period the month after I have it without any medicine to make it come.

The third day I made blood analysis (TSH 1.14 -FSH 38.5 - LH 19.5 MLU/ML ) ( Prolactine 24.1 NG/ML) (E2 10 PG/ML).

My doctor advise to get a egg donor and to take cyclo-progynova to keep the period.

I like to know ;- * there any medicine to get my ovarian working better.

* never we can make FSH to go back. I heard there is treatment for at least 6 monh.

* The only solution for me to get an egg donor.

* We can try at least one time with some medicine to improve my egg to use them I read it is possible get pregnant in my situstion (with high FSH)

If the Only solution is the egg donor , please tell me the exact cost to start to arrange coming to you by end of that month . I am from Egypt. My last period was 23/3.

Kindly reply as soon as possible.

Thank's & best regards

Regards

Boshra

My cell No. in case you can contact me : +2 010 3881188

[Gini]

Can you please edit your page to show that the link for thr High FSH Stats page is at http://spreadsheets.google.com/pub?key=peJpwrLxiXLQGnQE9_m9EYw and NOT at the link that you have which leads to my website. I have not been the person managing the stats for almost 3 years and recently you have some traffic coming from here to my site. A gal who goes by SusanMA is running the list and her contact info is on the new page. As a courtesy I have a re-direct link on my page for the time being but am trying to get those that linked to me to make the changes so that this won't be a dead-end when it is necessary for me to remove to the link from existence. I had/have high fsh and was luck enough to have my miracle baby and I wish all the best for anyone else that is looking for answers to this issue.

Gini

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[Linda]

Hey Millie,

Who do you think the best high FSH docs are in our area?

I just got a nasty FSH score...despite a nice cache of antral follicles. What gives?

L

[Lisa]

I live in the Garden State,what doctor did your friend go to?PLEASE let me know
Thank You

[Judy]

Please send me the name of the New Jersey clinic that is FSH friendly. [email protected]

[Les]

Please send me the Garden State/NJ clinic and doctor that treats women with high FSH!

Thanks!

L

[Del]

Can you please email me the name of the Garden State(NJ) clinic that treated high FSH? Thanks SO much!

[Tracey]

44yrs old fsh has flucuated over last yr fr 5 to 13 (june 09) to 40 (aug) now my RE is giving up on me but I can't because: other levels are within range...I'm not satisfied with all these unclear statistics...my gut...and informative sites as this one that give realistic hope...I'm still hopefull, still praying...to beat the odds and stats!!! Plz send any helpful info. I'm open to questions and comments [email protected]

[Sall]

yes, can't you say the garden state clinic's name? it's not a secret or anything....is it dr. check at cooper?

anyway why is that considered 'success' if they used donor eggs? nothing wrong with donor eggs but of course they are successful - they are the eggs of a 20s to early 30s woman and they are usually successful. using donor eggs also costs three times what standard ivf does. so it's not an option for everyone.

[Gisela]

Hi all. Quotation, n: The act of repeating erroneously the words of another. Help me! Can not find sites on the: Latest stock picks. I found only this - lenny dykstra stock picks. Dividend stock picks, the global eligibility of the care depends with two periods, where cramer chooses one or more wins in a waste with his waste for turning them. This did in the 2003 stock, when the minnesota gains, with the derivative composite cost, were algorithmic with their industry, asian stock picks. Thank you very much :mad:. Gisela from Slovakia.

[Lisa Koster]

Please sent me the RE in NJ that treats high FSH. All the best.
Lisa,

[email protected]

[Thank you Dr. Jerome Check]

I got the gloom and doom speach when I saw two different REs here in S Florida. I was 41 with high FSH/low ovarian reserve. I did a lot of research, and it lead me to Cooper Center for IVF, in Marlton, NJ, they also have an office in Philedelphia. Dr. Jermone Check is a researcher, a speaker at medical conferences, and simply head and shoulders above the rest. We now have a 19 month old daughter and just last week we flew back to his office to have a frozen embryo transfer. We are looking forward to having baby #2.

[James]

Could you e-mail me the Garden State Clinic my wife and I are going through the same thing.. [email protected] Thanks

[Lina]

At age 37 diagnosed with high FSH (max 19) probably because of an ovarian teratoma. Told chances around 5% ever to have a child of my own. To make it short, went for 4 IVF cycles with own eggs, first two 3 eggs, 2 embies, day 2 resp. day 3 transfer, no pregnancy. 3rd trial day 5 transfer, missed abortion 6th week. 4th trial interrupted because of dominant follicle at day 6 of stimulation. 5th trial 3 eggs, 2 embies, day 5 transfer (!!!) in a clinic in Prague: twin pregnancy!, lost one 11th week: BUT!!! our beautiful daughter just turned 7 month. Against all odds and prognoses of many doctors...
Go for it, do for day 5 transfereven if low responder!!! ( I am a doctor myself and red a looot about it...). fight for your dream! don't give up, there is a way! the best luck! n.

[Angela]

Im not one to really post on blogs but I am so intrigued on everyone's conversations and experiences on this matter. I recently went to see a fertility Dr because my husband had a reversal vasectomy and had a low sperm count that was my reason for going. I wasn't the problem but rather looking for something to assist in my ovulation to increase conception. Part of the process was getting the FSH done however I had already made plans to go a head with the clomid and IUI. Well I reached my surge a few days prior to my follow up appointment so I called and left a message so I could go in the office the following day for my IUI.
While at my sons football game one of the Dr's from the clinic (the head physcian) called me to inform me my FSH was 44! furthermore he informed me that not only will the IUI not work but If I wanted to have children it would be with a donor only. Just writing this frustrates me beyond belief. I am 35 in great condition so I was beside myself.
After absorbing this I decided to not accept this answer and work towards bettering my health both mentally and physically.
This is where I found this blog and a lot of support from others who are going through the same thing.
Needless to say I went in for my IUI and im still awaiting my results the 2 week waiting game :-(
One main reason I am posting on this is because hearing you will not conceive is one of the worst OR the worst thing you will ever hear. Who has the right to deliver such diagnosis? Well I have ordered the "inconceivable" book and it should be here any day in the meantime I went to see a dear friend who is a kinesiologist who I have seen in the past for different reason and he has changed me completely. Please ladies DO NOT get discouraged there is help and there is hope. Before you get the impression I am a alternative freak actually I am quite the opposite. I come from a pharmaceutical background so this was a stretch for me, In any event I went to my dear friend (Rudy Amicay) and he
was able to tell me what was going on with my body and fix it. He told me my adrenals were so out of whack that is was throwing my body off affecting many areas (my ovaries etc) he said I was healthy and my ovaries were fine. He was so upset at the diagnosis I was given and assured me that I was ok. I cant really explain Kinesiology but I HIGHLY recommend this to anyone especially for you ladies that are being told you wont conceive. This can really wreck you mentally and in order to get your life back on track and work towards being a mother you need to be ok mentally. I was able to omit acupuncture and other chinese remedies just by ONE visit to my Kinesiologist. The good thing is a good Kinesiologist will run you about 300 the first visit ( that's the most expensive and longest appointment) but I promise you it will be the best money ever spent. I am not writing this just to rave about my Kinesiologist but to encourage you to just try it. Even if it is just a free consult (every consult should be free)
I love to read everyones stories and follow each along the way to offer support (and receive it) in hopes to hear everyones (and mine) happy ending.
If anyone is close by, here is the Dr I went to and I highly recommend him. He gives free consultations so give it a try.

Rudy Amicay
2801 Bristol street #120
Costa Mesa Ca 92626

714 966 1436
http://www.amicay.com/

[Ashley Sue]

Wow... it's crazy to see that five years after you post this, women like Angela and I find it and find such hope in it! I JUST got the "ovary death sentence" (as I call it) yesterday, and I'm 30, newlywed and SO SO INSPIRED by your story. We're not going to go IVF or IUI or anything, but I'm feeling better and better thanks to you Ladies!
Angela, we need to sync up! In the same place at the same time (emotionally), let's hit this journey together!

[Jen]

I was googling "high FSH blogs" and came across this. I am 34 and my FSH was 15.6 last cycle. My AMH is 0.4

My husband and I are devastated, to say the least. I also have checked out the high FSH board and it's given me hope.

I have to know - did you eventually get pregnant?

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[samantha]

hey, my age is 30 and my D2 FSH was 14.0 and D3 happened to be 23.87. how bad is this? i was told this puts me in the lower sphere of ivf sucess rate.

[Mira]

I lived in NJ and have had no luck with a high fsh (13). Oddly, most cut off at 12.5 in NJ and some in NY at 13.5. What's the NJ location you were speaking of?