IVF with very high FSH?

[Dutchie80]

Thanks heaps for all that info buliej. I definitely have heard of EPP and the A/ACP but was totally fobbed off when I brought it up with FS. I'm going to print this out and ask FS about it again.

[buliej]

It would be great to share the reactions/thoughts of each of our FS to this. I'm going to try to put an email together to send to my FS on Monday/Tuesday. Hopefully, she will think it over and get back to me...

[Dutchie80]

That's exactly what I intend to do also. Will let you know how I get on.

[buliej]

Here it is written out by a Dr - but still understandable:

3) Agonist/Antagonist Conversion Protocol (A/ACP) with ?Estrogen Priming?: Estrogen primes follicle FSH receptors, thereby enhancing response to FSH. This forms the basis of the ?estrogen priming? approach in women with diminished ovarian response. The approach involves administering estradiol by daily injection, or by skin patch starting about 10 days prior to initiating high dosage gonadotropin stimulation. As with the A/ACP, the estrogen priming protocol is initiated a week post-ovulation (luteal phase start) or is launched off a birth control pill. It also starts with GnRHa administration for about 5 days whereupon menstruation ensues and the agonist is supplanted by an antagonist. But this is where things change slightly such that instead of directly initiating FSHr injections, the patient, while continuing to take the GnRH antagonist now receives twice weekly estradiol valerate injections or daily estradiol skin patches (I prefer the former) for a period of about 10 days. Thereupon, daily high dosage FSHr (600-750U) is administered once daily. Four to five days later, a small daily dose (37.5U) of LHr (Luveris) or Menopur is added. ?Estrogen priming? is continued until more than 50% of the follicles are at least 12mm in size whereupon it is discontinued.

My partner Jeffrey Fisch MD, Levent Keskintepe PhD, and I recently published on use of the A/ACP+ estrogen priming (Fertility and Sterility, 2008). Based upon a long experience using this approach, we unhesitatingly advocate the preferential use of this protocol in women with severely diminished ovarian reserve, who undergo IVF. *** I'm going to ask my FS to read this. The name of the Dr who wrote it is: Geoffrey Sher, MD.

Dutchie/Tigga - I'll PM you the link to the whole post by this dr.

[Dutchie80]

Thank you very much buliej, that's very kind of you and I am extremely appreciative.

[Tigga]

Hi Buliej & Dutchie.

I had an appointment with FS on Monday (my second follow since D&C complications). Looks like the antibiotics have sorted me out and bleeding has now all but stopped.

I asked FS about Estrogen Priming Protocols - unfortunately, he didn't go into any detail about it but did say "we could start tinkering with other options" for me. I suppose that was his way of saying it's worth a shot. I also asked about DHEA and he usually has refused point blank to prescribe - but this time he seemed more open about 'tinkering' with it. He said to do one more cycle at same protocol and if that didn't work - start experimenting with EPP and the likes of DHEA. I'm sorry I don't have too much info to share from him - he was not really in the mood to discuss it in detail on Monday's visit (don't you hate it when you feel like your bothering them with your Q's).

I won't be cycling for at least another 6 weeks or so - need to see out one normal period. I'm also still waiting for the cytogenetic testing results to come back - to see if this sheds any light on latest miscarraige. We had had karotype testing done when we embarked on IVF and both DH & I had normal results.

DH and I also went to an Adoption info night last night. Geez, I thought IVF was a challenge...the adoption process is as arduous (2-3 years) and is no guarantee either. It's given us some more thinking to do though. It REALLY shouldn't be this hard should it...all we want to do is share love and laughs and life with a child (or two or three)...how is that too much to ask? It's so unfair - especially when you hear there's 7,500 kids in Qld who for all kinds of reasons require foster care - because their parents can't/won't look after them. Sad hey!

Buliej, thanks again for all that info - it's really valuable!

Dutchie, how are you going?

Hi to everyone else - hope everyone's well!

[buliej]

Tigga - so happy to hear that your bleeding has almost stopped - mine hasn't quite yet - but it did take 2 weeks for it to stop after my first d&c.

We pay our FS so much money - whether they feel like answering questions should be irrelevant - they should suck it up and answer - otherwise, why pay for the consult - the very term "consult" describes something "consultative" requiring discussion. Sorry - I just get so mad - like we do half their work for them.

I have to say, I'm not convinced that EPP is "the answer" - but I just want my FS to consider it and then explain why it is or is not appropriate for me.

I was on DHEA for 2.5 months prior to this most recent cycle - am back on it again. It is suppose to take a full 3 months to really do its job - but that requires patience which I just don't have and my biological clock certainly doesn't have.

Tigga - maybe we will be cycling at the same time - I'm sure I'm approximately 6 weeks away...if not more

I think our Plan B may be a donor egg cycle in the US. We are not there yet, but I've mentioned it to DH and he has gone from a "NO - don't want to discuss" to a "let's see what happens with this next cycle first". I think doing a donor cycle here is just too hard and too long of a wait - in the US you get to preview all this information about potential donors and then pick one. Plus there are other benefits (privacy) in terms of doing it in the US - but this is off topic for this thread so I'll stop here.

I do not understand why adoption is so difficult here. I have read about this - Hugh Jackman's wife...Deborah F...s? has written extensively about this and it's shocking that it's so difficult when there is such a need.

Nothing would make me happier than to find a protocol that increases our chances - I sometimes feel on the verge of being so desperate and worry that I'm finding protocols that are designed only to appease and not to acheive results. I feel very vulnerable in that respect.

[Dutchie80]

Tigga- Really pleased to hear that you can avoid a d&c and your bleeding has almost stopped, you must be relieved.
It's also good to hear that FS is going to try a few different things with you, you just never know- it may work but you'll never know if you don't even try and that's the way I look at it.
Getting a lil worried that I won't be able to cycle next month due to financial reasons so we may be cycling close together after all which would be really nice.

buliej- I agree with you in that I too don't believe EPP is entirely the answer, I've just started reading an exclusively high fsh board and there are some ladies on there who still have quite poor responses even with EPP, so it seems it works for some and not for others. I also just want my FS to consider it and not just say "oh that won't work" because in my mind it is worth looking into but of course it's not going to work if we don't even try. I'd also like an explanation as to why it is or isn't right for my situation, I think I atleast deserve that much. Still putting e mail together for FS regarding this and the A/ACP, will update when I hear back.

Have a great day ladies

[Tigga]

Dutchie - Just read about you starting to cycle again and your fantastic 8.2 fsh level!! and am popping in to say GREATEST OF LUCK TO YOU FOR THIS ONE!! I'll have everything crossed for you.

BulieJ - I have another FS appointment on 18th Sept - to discuss next cycle plan. Perhaps he'll be more up for a discussion about EPP. I know what you mean about that feeling of desperation and the biological clock...it really fogs my head and sometimes I no longer know what I actually want. The counsellor at my clinic mentioned that she had a patient that had gone to Mexico for donor egg cycle - evidently super easy and loads of donors around. Might be something to look into - would be cheaper than US too I reckon. I hope you are well.

I'm still waiting for post D&C AF (it's now been 5.5 weeks). Hopefully not too far away - but I think I have decided to give it another go when FS gives me green light. Afterall, you've gotta be in it to win it!

[anyos]

hi ladies, haven't posted here for a while but thought I might after reading recent discussions.

Tigger I hope you're ok and glad you're back on track with planning the next cycle. Lets hope the FS is a little more accomodating and willing to explore other options for you.

Bulie J, how are you going? It's hard gauging what the right protocol is and trial/error can be so expensive! We've explored pretty much everything out there, natural fertility (which worked for us initially), donor eggs (DH isn't happy about that one) and adoption as well. I can't understand either why donation and adoption is so hard here.

Dutchie how are you going honey? When are you having a scan?

AFM just started new cycle, FSH 10.7, flare cycle, 10mg Lucerin & 300 Puregon. The Lucerin is messing with my head, yesterday I felt like I was under the influence of 'class A' drugs! Much better today thankfully.

btw this some feedback from my FS regarding empty follicle syndrome & EEP:

1. What is your view on this article on Empty Follicles by Dr Sher of SIRM IVF Authority: “Empty Follicles” – An IVF Egg Retrieval Mystery Explained

Answer -I agree, which is why I recommended a different treatment regimen and a higher dose of the trigger injection to try and do everything we can to get the eggs to mature and release from the side wall. *The quality of the eggs, though, if there were any there, would not have been very good: That is why the more difficult it is to successfully aspirate an egg at egg retrieval, the more likely it is that such an egg is chromosomally abnormal and "incompetent" (i.e. incapable of developing into a normal pregnancy). This state of affairs is most commonly encountered in women with diminished ovarian reserve (i.e. "poor responders"), women over 40 and in women with polycystic ovarian syndrome (PCOS) who do not receive an optimal protocol of controlled ovarian hyperstimulation (COH).

2. Do you use estradiol/estrogen priming in your treatments?
(IVF Authority: IVF Ovarian Stimulation: The GnRH Agonist/Antagonist Protocol)

Answer -I have used a modified estrogen priming regimen in the past with not such great results.* We can discuss if the next cycle is not any better.

3. What are your thoughts regarding using the Colorado method?

Answer - I have yet to see a clinical paper showing the success of the Colorado protocol. *Some of it is counterintuitive to me, like using antibiotics that, in my view, may
actually hinder implantation. *Colorado is designed to try and improve implantation.
It has nothing to do with improving eggs.

[Dutchie80]

Hi girls,

Tigga- Hope AF arrives for you soon and you can get stuck into another cycle. I'll be cheering you on the whole way. Thank you for your kind words and yes, 8.2 is definitely nothing to be sneezed at.

anyos- thanks for all that info, I'm putting together an email for my FS regarding EPP and the A/ACP so the extra info you provided is really great. I too wondered about empty follie syndrome as I have in all my cycles had follicles big enough that should have yielded eggs but unfortunately didn't (they would have been immature but still should have had eggs in them) so wondered whether a higher trigger dose might be beneficial for me. Look I may be way off they have never mentioned EFS but I think it's worth mentioning. Lots to think about and discuss further with FS.

buliej- Hope you are travelling well hun.

[anyos]

a friend of mine sent me a link to this forum - High FSH and Premature Ovarian Failure - Fertile Thoughts

there's a thread on High FSH positive outcomes which is inspiring

xx

[Dutchie80]

Thanks anyos, I'll have to check that out, it's always reassuring to see high fsh success stories

[Tigga]

Hi All,

Thought it was about time I sent an update.

anyos - Thanks so much for that link. It definitely helped boost my 'hope' - that BFP's for high FSH'ers can and does happen. Thanks so much. I hope you're cycle is going well!

Dutchie - I hope you are ok and the clouds are lifting for you. It takes time - but it does get easier.

buliej - How are going? Any plans to cycle again with EPP?

AFM, 7 weeks since D&C and AF finally arrived! Very light this time, but she's at least here. As long as there's no surprises I will be cycling again next month (I'm sitting this cycle out as per FS's recommendation). News from me is that, today I started on DHEA (FS finally prescribed it) which I am hoping will make the difference. I'm on 3x25mg tablets daily (75mg). Statistically, it takes 3-5 months to get maximum benefit from DHEA, but I'll continue cycling until that point - may as well get in as many as I can while the safety net's still in place.

Can I say that I think it's great how you gals can email your FS's and FN's for info...I can barely get the Q's answered when I'm in there - let alone get an email address off mine.

[Tigga]

anyos - Sorry about your cycle which I just read about on the other thread. I've been there. My first cycle had one follie at first stim scan (I was on 450 Gonal F) and then 2 more popped up at 2nd scan. On FS's recommendation though, I went to EPU and did ICSI on the two lonely eggs that were retrieved. Only one was good enough to transfer (that was the chem preg). I'll be praying for a natural miracle for you - seems like us high FSH'ers get a few of those, so it can happen. (I'm secretly hoping for one myself in my break! Oh! We can but dream!!)

[Dutchie80]

Tigga- woooohoooo for starting the DHEA, I hope it makes all the difference for you and boosts your egg quality and quantity!

I would seriously hound your FS/FN for their email, I think you have every right to have it to ask any questions you have as they arise. I was given my FS's by the nurses when I asked for it without any real dramas and I sent off an email tues just gone and had a reply within an hour- I was very impressed! Now if I could just get them to come round to the idea of trying the A/ACP with EPP with me!
When I heard back from FS regarding my latest cycle, I did ask about this protocol and they said they would have to look it up but basically that studies have shown no real improvement in situations like mine I guess I'll have to work on them some more and get my butt into gear with this email- I've had a lot on recently.

[anyos]

good morning lovely ladies,

Tigga, thank you for your msg, we agonised over the decision not to go to EPU but in hindsight it was the best call. I thinks its great that you're taking a month off to get your cycle back on track, I found it made a huge difference for me (just no eggs!). I've also been on DHEA for 3 months roughly but just on 50mg a day. Re contacting your FS, push, push, push!!! I've discovered (the hard way!) that you have to push for things. You should have 24/7 access to someone at the clinic and when things don't go as planned they should be in contact to answer questions/explain options etc. I loved that forum also, bring on the 'natural' pregnancies!!!

Dutchie, how are you going lovey? Did you end up having any pregnyl for luteal support? Am so glad you've got direct access to your FS. My FS said the same thing about EPP last time but said she'd consider it next time if we wanted. Perhaps you should say to your FS that you're not going to be doing many more rounds and want to try to alternative protocols?

AFM, have had two doses of pregnyl, had a bt yestereday for progesterone/estrogen levels which were all fine. God, pregnyl hurts! Feeling nauseous but boobs not sore (a sure-fire sign for me) so I think its just the drugs. Next steps for us (depending on outcome of this cycle) are a month off in October and then cycling for the last time in November.

xxx

[Dutchie80]

Hi anyos- Yes I think I have to start being a bit more firm and really push for what I want. I'm going to send off an email re: lap and I think I will mention epp again aswell. Thanks