Not sure where else to post this (high FSH questions)

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dreamchaser's picture
Joined: 01/31/07
Posts: 681
Not sure where else to post this (high FSH questions)

I've noticed that there are a few ladies on here who have had high FSH and been able to bring it down and conceive. I'm curious how you did it or if it just came down on it's own?

As some of you know, I was a poor responder and in March I was told I have premature ovarian failure. My FSH then was 50! My FSH was never an issue in the past but my RE believes that my high E2 in the past was giving us false low FSH readings. I was sent away with instructions to get cd3 b/w done if I get af on my own, otherwise to come back in 6 months. He wants to monitor my hormones to determine when I need to start hormone replacement therapy. I'm not having any symptoms of menopause so I was told that was a good thing. However, what has happened since has surprised me! I'm 99.9% sure I've been ovulating on my own! I've been getting perfect ewcm and then 14/15 days later I get af. I even did opk's last cycle and got a +! I've been going every month since my diagnosis for cd3 b/w. My E2 has been pretty good for day 3, my LH has come down alot, and my FSH has been coming down too, though still high. I missed one month but the 2 I've had done were 21 and 28. I have an appointment with my RE in September.

I'm just wondering if anyone can shed some light on this? Any experiences to share? We do still want to have a child, so we're not preventing. However, after 6 yrs on this roller coaster and after my diagnosis in March we made the decision to stop treatments (donor eggs/embryos were our only option at that point). I just can't help but be baffled by what is happening to my body the past few months! It's like after years of being annovulatory, now it wants to ovulate and be somewhat normal?!?

~Jodi

ETA, Not sure it matters or not but I just turned 34 in May.

Breen31806's picture
Joined: 09/05/06
Posts: 1172

Hi Jodi! I don't have anything to offer but wanted to ask if maybe the Ovarian drilling you had done could have had an effect? Maybe it just took a while for your body to respond to the procedure?

dreamchaser's picture
Joined: 01/31/07
Posts: 681

You know it has crossed my mind. We never gave my body a chance to see what it would do afterwards. I had the surgery Sept. 29th (I was on cd5) and we went ahead and induced af with meds on cd35 and went right in to a medicated cycle. That cycle I actually surged on my own and we did our IUI. I had to take the next cycle off due to clinic closure for the holidays and unfortunately had some really weird bleeding episodes all month long. When I did my next medicated IUI in January that's when I went back to my 'usual' non-responding self and the nurses commented that in both Jan and Feb my E2 was really really low, even while stimming. We did another cd3 b/w for March and that's when I was diagnosed and everything changed, again.

Breen31806's picture
Joined: 09/05/06
Posts: 1172

I hope your body is just adjusting to the procedure and explains you O'ing on your own. Keeping my fingers crossed Smile

mrs.doolittle's picture
Joined: 02/18/08
Posts: 1335

(pg ment)
Hi Jodi! I'm one of the high fsh'ers on here. After I was diagnosed (when I was 33; almost 37 now) we stopped keeping track of my fsh level. I was told that one high reading is all they need to know that fsh is a problem. We went ahead with treatment and a lot of hope. My 2 IVF cycles were failures (few eggs, low fert rate, and no embryos made it past 4 cells in either cycle). I was ovulating (positive opks and 7dpo progesterone was usually above 5), but my egg quality was obviously an issue. We started to give serious thought to donor eggs, but cost was a major concern so we decided to really give acupuncture and herbs a try for a few cycles before our "last ditch" effort of an injectable IUI cycle using our leftover Follistim. We figured it would expire and be thrown out so why not try it. And I really liked that my acupuncturist was a traditional Chinese medical doctor who was certain that I was capable of getting pregnant because there was no mechanical reason why I couldn't. No idea if acupuncture/herbs helped or if we were just lucky, but I'm finally pregnant for the first time.

It's a great sign that you're ovulating on your own now! Maybe the drilling helped after all. There's another site that I used to frequent for women with high fsh. The women there might have some more insight. Just PM me if you'd like the the site info.

augusta26's picture
Joined: 08/05/05
Posts: 158

Hi Jodi,

No insight into high FSH, but Beth offers some interesting suggestions...I hope you ovulating on your own is a great sign and that you get surprised with a natural BFP.

Take Care, A

Joined: 01/05/09
Posts: 27

I was told by one RE that it was likely I'd never conceive because my FSH was 35. I started to read up about it and came up with my own "theory" about it: that it may actually be normal for me. Twins run in my family and I thought maybe high FSH is normal for the women in my family. Of course, this may be complete rubbish, but the important thing is it helped me FEEL better about that RE's diagnosis.

What I learned about controlling FSH had the same effect. I read about women who used acupuncture (though I never tried that) and herbs. I tried wheatgrass and black cohosh. I stopped drinking soymilk and limited my intake of soy products. When I went to a new RE, I believed I had DONE something to control my FSH -- and my FSH was 11!

So I guess it might sound a little kooky, but for me I almost felt like it was a bit of mind over matter. The important thing for you is that you're ovulating. Learn all you can about FSH and do what you feel is best for you. Don't give up!

meggyrn's picture
Joined: 02/16/09
Posts: 2263

Hi...I don't really have much advice to offer you. I've only had my FSH done once and it was 8.1 but my E2 was 98 so I think my FSH is higher than what it shows. I was told that I have DOR and after 3 cycles I am finally convinced I have crappy eggs. I did use DHEA for about 6 months when we were trying on our own. With my 3rd cycle of IVF I responded a lot better to meds and had more mature eggs, so don't know if it was the DHEA.

I'm glad that it looks like you are ovulating on your own. Maybe some month you can catch that golden eggie.

Joined: 03/16/15
Posts: 53852

Hi Jodi,
I can imagine how frustrating it is not to have any clear answers. I do hope that it is true what the PP said about the ovarian drilling and that it needed time to kick in and make a difference.
I don't have any specific advice but wanted to wish you all the best and hope that your miracle comes to you soon!
(((HUGS)))

dreamchaser's picture
Joined: 01/31/07
Posts: 681

Thank you for your replies ladies! Smile

Beth, When I first got my diagnosis you gave me a website and it was a little helpful. But most everyone there is ttc and I'm not officially doing that anymore. They talked alot about finding a dr who will treat you with high FSH. I also found a message board for premature ovarian failure and just never felt like I belonged there. A few started questioning my diagnosis based on the fact I am having cycles on my own now and that I only had one high FSH reading when I was diagnosed. Just a little frustrating! :confused: I was planning on doing acupuncture but right now I feel like 'if it isn't broke...' seeing as I'm cycling on my own.

Joojoobee, Twins run in our family too. Both on my mom's side (my maternal grandmother had twins) and on my dad's side too. I like your theory though! Wink

Meg, I was taking DHEA for a couple months back in January. My RE was hoping it would help my response to the meds. He originally said I have DOR but after my March FSH he diagnosed POF. Sad I don't think it really did anything. I wasn't even on it for the recommended 3 months. I stopped taking it as soon as we stopped ttc.

Who knows what's going on! LOL!! I appreciate all your help and input ladies! It's so nice to be able to come here and ask questions and get some feedback. Guess we'll see what my dr says in September! One can only hope that I get lucky in the meantime!! Biggrin