HIGH FSH & need HELP!!!!

[lilmd]

I read these boards quite a bit but usually don't post. I feel like I need help from people that know and have been down the road that I have traveled. I just turned 35 and have been TTC for 4 1/2 years. I have already been through 4 IUI's and 2 IVF cycles... all negative but 1 chemical pregnancy. I found out late last year that I have high FSH and that was likely the reason for my low follicle counts in the IVF attempts. I have had countless (at least 5) canceled cycles. Most recently I have been taking ganirelix to try to bring my FSH down enough to do another cycle of IVF. That worked to the extent that I was able to start stimming but 1 cycle had a dominant follicle so we had to convert and then this past month I had 4 good follicles coming along and they didn't put me back on the ganirelix and I ovulated on my own. We tried the same protocol start this time with the ganirelix to push down my FSH and it went from 10.4 on day 2 to 12.3 on day 5. NOW my doctor wants to meet with me, I can only guess to tell me IVF is not for me. I don't know what to do... HIGH FSH is kinda a curse around here (Maryland) and no one really wants to touch these cases.. even places that say that take high FSH patients.

Does anyone have any ideas, protocols or advice??? I feel like I am ready to give up but I know I can't!

[fewsa]

sorry to hear. Wish I could help

I have a ? for my wife fsh was 18.9 and she is 34 2 months ago it was 11.
doc says there is nothing he can do about fsh.

What did your doc recommand to lower fsh.

[courtney]

lilmd...sorry to hear of all your troubles. I have high FSH as well, 12.5 when I was first diagnosed. Fortunately, we attempted IVF and became pregnant with twins on the first try. My clinic used a microdose Lupron protocal and 300u of Follistim. THe microdose Lupron protocal is specific for high FSH patients, and I credit it for our success. Many women on this board with high FSH attempted both the long Lupron protocal first and then the microdose...and the microdose proved successful. If you havent tried it may be worth asking. We only had 5 follicles, retrieved 5 mature eggs, all 5 fertilized...and 2 made it!

fewsa...FSH is an indicator of low egg supply (diminished ovarian reserve). Your doctor is probably referring to the fact nothing can be done to reverse the diminished ovarian reserve.

Hope this helps!

[lilmd]

Courtney, Thank you for your response. Unfortunately all the clinics that I have dealt with (3) will not move forward with stims until the FSH is below a certain level. The current clinic (John Hopkins) will not allow me to stim unless my FSH is 10 or below... can you believe my FSH was 10.4 on Monday.. they are really splitting hairs with the cut off! I wish they would just allow me to try a protocol and see what happens. I did try a Lupron and a microdose Lupron protocol in 2007 and I had a horrible response with that. I ended up being on Menopur and Bravelle and I seemed to have a better response with that. Again, that was in 2007 before I was diagnosed with high FSH but I have been unable to find a clinic in Maryland that will allow me to move forward with IVF while my FSH is high. Did you take any medications to try to bring your FSH down prior to the cycle starting?

[lilmd]

Fewsa, I have been to several doctors.. my most recent doctor has tried both ganirelix and certotide. Around 10 days past ovulation I get BW to ensure that I am not pregnant already, start the ganirelix and take that every day until my period. On day 2 I go to the clinic and get the FSH measured. It has worked for me (not this month) to bring the FSH down but due to other factors I have not made it through a full IVF cycle in over a year! If your clinic isn't measuring FSH every cycle then she should be able to move forward with IVF and see what happens.

[fewsa]

What I don't understand 1 month ago her fsh was 12 and 12 folicals.

One month later fsh 18.9 9 folicals.

She failed ivf in june.

[fewsa]

yes we had 9 eggs
3 embroys frozen
2 implanted 1 died day of
3 never fertile

[karenvancouverisland]

my first 'regular' ivf cycle was cancelled. then we discovered i have high fsh- 11.2 on day 10 of clomiphene challenge test.

my 2nd cycle- they put me on a gonal-f flare protocal for 'low responders' (genesis clinic in vancouver) no down reg- day 4 start after AF, 225 ui of gonal F 2xday.

once follies got larger, introduced cetrotide and luveris. i only got 2 large follies, both fertilized with ICSI, both implanted, got PG, but m/c at 12 wks.

now, against my dr's advice, i'm taking the supplement DHEA, 25mg 3xday, as according to preliminary research, it can lower FSH in women like me with diminished ovarian reserve. my RE doesn't recommend it as it's 'unproven'.

[lilmd]

The thing I don't understand is it seems like other people are allowed to begin stims even though their FSH is elevated but the 2 clinics that I have been to since I have been diagnosed with high FSH will not allow me to even stim until my FSH comes down to their predetermined level. Each place was different based on their lab standards. The 1st place was 13 and the place I am going to now is 10. I am currently trying to find a place in Maryland that doesn't utilize this cutoff for initiating a cycle but currently waiting for phone calls. Most recently I was not able to start because my FSH was 10.4 and the cut-off was 10.. I am not kidding!!!

[courtney]

lilmd...Sounds absurd to me. It is a real shame those clinics are more interersted in boosting their success rates than giving you a chance to get pregnant. In the long run, you will find a clinic that will treat diminished ovarian reserve and will probably have a better experience. Im sorry you are going through this, I know it cant be easy. My clinic accepted me with 12.5, but made it pretty clear if it didnt work the first time my only option may be donor eggs. But at least I got a shot!! GL to you!!!

[Kabillion]

Have you considered going to another clinic? I had to drive 2 hours each way to a clinic that would accept me and my high fsh (13).

My clinic was successful with me and I became pregnant with twins at age 37. You might have to drive further, but it was worth it to me and I hope it will be for you too : )

[stefanie]

Drink a shot of wheatgrass every single day (available at Jamba juice)
quit coffee and any caffeine.

If you can't buy a shot of wheatgrass, buy the powder or pills (best and purest brand available at whole foods) and take every single day.


You can also read Julia Indichova's book Inconceibable and visit her website http://www.fertileheart.com/

Do not give up. But this is a wake up call to change your diet and what is affecting hormone levels. A good chinese practitioner can also help. The Infertility Cure by Randine Lewis was another book that really helped me change everything.

In december I was rated a hopeless case, I am now pregnant with twins. I changed my whole diet and lifestyle and lowered my FSH. Mine was not super high to begin with, (i have other issues) but it was a by product of the wheatgrass)

There are things you can do and eat (and more importantly not eat) that can help. It was a lot of sacrifice, but I gave myself a year, and 8 months later, here I am.

stefanie

[stefanie]

also, keep testing. You are really close. And don't worry, every month you have to wait, you can eat better and really improve the egg quality. FSH has a lot to do with success of these treatments, but remember it is also financially in your interest to do it when your success rate is higher.

I'm at a hopeless case clinic here in NYC and they have a much looser cut of for the IVF. I'm sorry that you are frustrated.

keep the faith. you are young and I have high hopes for you.

s

[lilmd]

Kabillion,

This is the 4th clinic that I have been to. The 1st one they didn't identify me as high FSH.. this is where is did 3 IUI's and 2 IFV (plus 2 canceled), the 2nd place identified that I had high FSH and tested me for several months and when it didn't come down they said there was nothing I could do. The 3rd place I specifically asked if they were a high FSH clinic and I was assured that they were and they treat patients like me all the time. I started off trying to do natural cycles and 2 IUI's with them and when I pushed for IVF they started trying to reduce my FSH and will not allow me to move forward until it is 10 or below. So basically I feel like I have been wasting my time with them because I was led to believe that they would treat me and the only thing they really want to do is natural or IUI.

I am looking at the Cooper Center as an alternative and I know that they do IVF for high FSH patients. It is about 1 1/2 hours away but I can do the monitoring locally... the communication is bad though. I did a natural cycle with them earlier this year and sometimes I didn't get calls until 8 PM. I am guessing they would be a bit more structured with IVF though.

[lilmd]

Stefanie,

Thank you for all the good information. I have been taking wheat grass since last November. Over the course of this long journey that I have been on I have seen 3 different acupuncturist for long periods of time. My FSH did not come down as a result and I have taken a break from my most recent acupuncturist. I don't drink caffeine and for a period of time even quit drinking anything cold and ate nothing frozen (no ice cream!)... at the advice of my acupuncturist... That had something to do with digestion. None of the things I have tried have done anything to lower my FSH. I am really at a point where I think my FSH is as low as it will get and I just need to find a clinic that is willing to work with me! I will check out the link that you sent and see if there is anything there that I haven't yet tried Thank you again and congrats to you!!!!