Posts Tagged ‘High FSH / low AMH / poor responders’

What seems to work best for which poor responders and women over 40?

Thursday, June 3rd, 2010

This is one of those areas where we’d hope the empirical literature would be able to tell us what works for whom and under what conditions. But unfortunately poor responders and women over 40 – and particularly poor responders over 40 – are a relatively small group and rather neglected in the research (JMHO). So, what can we draw on instead?

This isn’t particularly scientific, but if you look at some of the research that’s been conducted over the years and combine this with informal sources such as the Over 40 High FSH Board‘s Timeline post (click here or search for “timeline” to find the latest) and also the high FSH google stats page, and also based on what I observed (IVF successes and failures) over many years on those high FSH boards, here’s what I concluded:

  1. There didn’t seem to be any pattern about whether the flare protocol, the antagonist protocol, or Mini IVF worked best – it’s basically a crap shoot. You just have to try them and see.
  2. The high stim success cases (live births) were generally women under 40 with a lot of antral follicles. The few over 40 exceptions tended to have higher AFCs (>5).
  3. The VAST majority of over 40 IVF success cases were low stim. [Lots of natural conceptions too, but of course there are many more people ttc naturally than with IVF, so it’s hard to infer whether, say, low stim IVF is more or less effective per cycle than ttc naturally – High FSH specialist Dr. Jerome Check thinks IVF gives high FSHers 2.5 times better odds for that cycle cf ttc naturally in your late 30s and early 40s.]
  4. Often on high stims you can get more follicles and sometimes more eggs retrieved, but the number of embryos generally seemed to be the same from either high or low stim (I’m excluding natural and boost protocols from low stim here). In other words, on high stims you often get more empty follies and/or lower fert rates.
  5. Those of us over 40 gals who’ve tried both high and low stim have quite often seen a difference in eyeballable embryo quality – just one example, but check out my high and low stim embie pics and see for yourself

So … based on what I’ve seen, my conclusions for poor responders/high FSHers/low AMHers were:

  • Under 40 and with OK AFC –> give medium-high stims a try first (say, 450-600IU)
  • Over 40 but a pretty decent AFC (say, consistently >5) OR under 40 with a low AFC –> try medium stims first (225-375IU)
  • Over 40 with a low AFC and FSH not through the roof –> try low stim (75-150IU)
  • Really excessively high FSH or a system that goes wacky with drugs –> go natural (BD or IVF) or try a ‘boost’ cycle (start natural, add tiny 75IU boost IF needed based on monitoring)

Not very scientific, but FWIW, that’s what I concluded in the end (after starting medium/high stim at age 40 and eventually listening to my wise board buddies and Jerome Check – and trying low stim).

Please note that this post is directed at couples and women who do NOT at this point want to consider donor eggs, but want to try and get a handle on what might be the best approach to try with their own eggs.

Other posts of potential interest:

What are the main IVF options for poor responders?

Tuesday, June 1st, 2010

In an earlier post I covered what a high FSH/low AMH reading means, what else to ask for in the way of diagnostic investigation, and the basics about whether this is a ‘no hope’ diagnosis or not.

I’ll talk in this post about the main IVF protocol options for women with high FSH/low AMH/DOR and poor responders, but will be back sometime soon with a post about other lower-cost options for those not willing or able to do [more] IVF.

IVF Protocol Options

OK, first let’s talk about protocols. As I mentioned in the post about the main about IVF protocols used in New Zealand, there are basically three possible protocols that are used for poor responders, and 1. The “long protocol” is NOT one of them. The main options for poor responders are:

2. The microdose flare – usual starting protocol for high FSHers and women over 40. It’s less likely to oversuppress poor responders than the long protocol.

Usually but not always starts with a course of BCPs (birth control pills) for about three weeks, then you stop for a couple of days, then start your microdose course of Buserelin (this gives your ovaries a kickstart or ‘flare’), then a day or two later you start your stims (Gonal F injections). As with the long protocol, you stim for about 10 days with scans and blood tests every 2-3 days. When your follies are ready, you are instructed to take a trigger injection and turn up for egg collection about 36 hours later.

3. The antagonist protocol another option for high FSHers, poor responders and older women. Often the first choice protocol for these women, but in NZ it’s typically tried only after the flare protocol has given a weak response because the drugs are cheaper for the flare.

Usually starts with a mild pre-cycle suppression course of estradiol valerate (E2V) from CD21 or 7dpo the previous cycle (you can ttc on your own the previous cycle; this won’t affect a pregnancy); when AF (your period) arrives this is counted as Day 1 and you may be asked to go in for a baseline scan to check that you have no cysts, your antral follicles are ready to go and no big dominant follicles; on CD2 you start stimming, having bloods and scans every 2-3 days. When your lead follicle reaches 14mm, you start Cetrotide (the antagonist that stops you ovulating too soon). When your follies are ready, you are instructed to take a trigger injection and turn up for egg collection about 36 hours later.

4. The Modified Colorado protocol (a.k.a. The “Wellington”)

“As an adjunct to standard IVF or TER for patients with recurrent implantation failure who have had no problems identified following a recurrent implantation failure screen. The Wellington is a treatment that in theory will improve the lining of the uterus to aid implantation of the embryo.”

Stim Options

OK, having discussed with your specialist which protocol to try first – and don’t forget to ask what he/she would try next if the first one works very poorly! – the next question to discuss is what to use to stimulate your ovaries. The usual default is to start with straight Gonal F; if that doesn’t work well, you might raise the possibility of adding something else as well. The options are:

  1. Straight Gonal F (or Puregon) – this is pure FSH
  2. Combination of Gonal F (or Puregon) and Luveris (pure LH)
  3. Combination of clomiphene (Clomid) and Gonal F or Puregon

Dose Options

There are two diametrically opposed schools of thought among specialists when it comes to how to treat poor responders. They are basically:

1. SHOUTING: High FSH means your ovaries do not respond well to IVF stim drugs. It’s like having ovaries that are hard of hearing when it comes to stim drugs’ message, so the best strategy is to shout at them very loudly (i.e. give you a high dose of stims). This might just get you an extra egg or two. IVF is a numbers game, so more eggs improve your odds.

2. Coaxing: Women with high FSH often have eggs that are more fragile, especially if they are ‘older’ as well. High doses of stims simply ‘fry’ those eggs. If you have high FSH/low AMH, you are going to be a poor responder, so it’s a waste of time going after quantity; the best strategy is to go for quality. You can’t actually improve egg quality per se, but you can avoid damaging eggs with high doses of stims by using very low stim protocols. ‘Low stim’ usually means 75-150IU/day. [I’ll write more sometime about the details of some interesting low-stim protocols used overseas.]

Which of these makes more sense for you? Well, the body of research is building but still hasn’t yielded a definitive answer. My own observations over several years (talking to high FSH women and watching who achieved success and who didn’t, plus reading the empirical research) have been that the only high FSH successes on high stim IVF seem to be women under the age of 40. The vast majority of high FSH IVF successes over age 40 seem to be low stim (with a few exceptions). Younger women with high FSH can also do well on low stims. This isn’t scientific research; just my own observations based on a lot of cases I have known about internationally.

Having said that, the New Zealand definition of ‘max stims’ (usually 300IU) is actually more like ‘medium stims’ internationally. In the States, ‘high stim’ generally means 600IU or more, and there are (believe it or not) some total egg-frying protocols that crank it all the way up to 900IU.

My own hunch is that if you are under 40 OR if you have a reasonably decent antral follicle count, consider giving 300IU (or 450IU) a shot. But if that doesn’t get you decent numbers or,  if embryo quality looks poor, consider a switch to low stim for your next try.

If you’re self-pay, there’s a cost advantage to low stims as well.

I’ve got high FSH/low AMH … what does it mean?

Saturday, May 22nd, 2010

Ohhhh boy, I know this topic better than just about any other, as you may have seen from my story. I remember finally plucking up the courage to see a fertility specialist, being sent for blood tests, immediately getting online and googling what all the tests were and how to interpret the results … and fast coming to the conclusion that the absolute worst case scenario was an FSH over 10. “The cruelest number of all” was how one site described it.

If you’ve clocked in with elevated FSH (usually defined as any reading >10) or OK FSH but elevated E2 (>150 in NZ units, or >40 in U.S. units) or low AMH (<14 pmol/l in NZ units, or 2ng/ml in US units), then you have probably been visiting Dr. Google and have come up with a very depressing view of your chances. Your specialist may also have told you this is not good news. And no, it’s not, but here are a few snippets of information I’ve been able to glean in my travels.

First, let’s blow a few myths out of the water …

  • Your age is far more important than your FSH – if you are 33 years old with an FSH of 20, then you do NOT have the eggs of a 43-year-old. You have the eggs of a 33-year-old, just fewer of them than your average 33-year-old.
  • If your FSH fluctuates and is sometimes high and sometimes normal (with normal E2 as well), then your prognosis is about the same as if your FSH was consistently slightly elevated (say, low teens).
  • Even if your FSH reading is quite high (say, 30 or 40 or more), this alone does NOT mean you are in menopause. Menopause is defined as not ovulating and no periods for 12 months. If you still get AF – and particularly if you are still ovulating! – you are definitely NOT in menopause!
  • If you do get pregnant, your chances of miscarriage are just the same as anyone else your age – high FSH does not increase the chances of aneuploidy or miscarriage (yes, this has been studied!).

What does high FSH/low AMH mean?

  • You have diminished ovarian reserve (DOR). This means you are running low on eggs and are likely to hit menopause sooner than average (the average is age 51). How much sooner is very hard to say – it could be 10 years away or more; it could be much sooner.
  • You are likely to be a “poor responder” to IVF stimulation drugs. In other words, if you try IVF, you are likely to produce fewer eggs than most women and your chances of pregnancy will be lower because of the smaller numbers.

How can I reduce my FSH?

The short answer to this is that it’s a wild goose chase. Nothing much works to get the number down consistently, but the more important point is that even if you did, it doesn’t change the fact that you are low on eggs. Don’t waste your energy chasing a lower number because that isn’t going to get you pregnant. What you do know for sure is that you are short on time, so put your energies into finding the golden egg(s) from those that are left.

Having said that, it is possible to artificially suppress FSH using either Buserelin (an agonist), birth control pills or some form of estrogen (such as estradiol valerate). This is usually done prior to starting an IVF cycle and is known as ‘pre-cycle suppression’. More on that in another post …

Should I believe just one reading?

It’s never a good idea to make major decisions based on one blood test result, or even on two or three tests that confirm a similar result. There are some other tests of ovarian reserve, and it’s a good idea to ask for them:

  • FSH – Follicle Stimulating Hormone – should always be done with a test for estrogen as well (otherwise it’s uninterpretable); should be done on CD2-3 of cycle, although some drs will do it CD1-4.
  • AMH – Anti-Mullarian Hormone – may be done at any time during the cycle
  • AFC – antral follicle count – this is a vaginal ultrasound,  usually done early in your cycle, where the dr counts the number of ‘resting’ or ‘antral’ follicles that are candidates for selection at the beginning of a cycle. This gives you a  very rough ballpark of the maximum number of eggs you might get on the right IVF stimulation protocol.

Is there any hope for women with high FSH not using donor eggs?

High FSH does present some difficult challenges. However, there have been success cases, lots of them, especially among those with just mildly elevated FSH (in the teens). At higher levels (FSH in the 20s, 30s and 40s), we still see successes, but just in lower numbers, and the success cases show a definite drop-off in older women. There have been some rare cases of success in extremely high FSH cases – two I know of personally were a 28-year-old with FSH 164 (yes, that’s a hundred and sixty-four) and another with FSH clocking up to 110 who had three children over several years (including the last one at 41).

Those interested in poring over some unscientifically documented success cases should check out the following links:

I’ll follow this up soon with some more information on treatment options for high FSHers, including natural approaches and alternative medicine as well as different IVF protocols that seem to work best for high FSHers.

In the meantime, a great resource to check out is my friend PJ’s site: http://highfshinfo.com

What is assisted hatching?

Saturday, May 1st, 2010

Assisted hatching is an optional extra procedure used in IVF where a small hole is made in the shell (or ‘zona’) of a Day 3 embryo. This is supposed to help (in some cases) the embryo ‘hatch’ out of its shell and transform itself into a blastocyst (usually on Day 5).

Probably the best site to get a clear understanding of assisted hatching is the one from the Advanced Fertility Center of Chicago, which shows in great detail how the hatching process works, including a pic of an embryo actually in the process of hatching to become a fully hatched blastocyst. Cool!

In New Zealand assisted hatching is not part of the default IVF protocol, so you would need to ask your specialist about it.

My understanding is that public funding won’t cover assisted hatching (I could be wrong about this – please chime in if you know of criteria for eligibility). But, if you were doing a publicly funded cycle and your specialist agreed it might be a good idea, you could presumably pay for it out of pocket (it’s a few hundred dollars).

If you are a self-pay patient, obviously the choice is with you and your specialist, so ask. However (and someone please update me if this is no longer the case), if you have the OK to transfer more than 2 embies, apparently the clinics are not allowed to do AH on more than two. I can’t fathom the reasoning on that (especially for women over 42), but there you go … Minor trivia, but worth knowing in advance (if you’re like me, you hate surprises cropping up during the cycle).

Just to give a broader perspective, in the States, where patients are either paid for by insurance or out of pocket, assisted hatching (AH) seems to be used more widely. The Advanced Fertility Center of Chicago says they do it on all embryos, but they also offer the following useful list of criteria:

Who should be treated with assisted hatching?

The most commonly used indications for assisted hatching with an in vitro fertilization case are:

  • Age factor – Couples having IVF with the female partner’s age over 37
  • Egg quantity and quality factor – Couples in which the female’s day 3 follicle stimulating hormone (FSH) level is elevated
  • Embryo quality factor – Couples having IVF with poor quality embryos (excessive fragmentation or slow rates of cell division)
  • Zona factor – Couples having IVF with embryos that have a thick outer shell (zona pellucida)
  • Previous failures – Couples having IVF that have had one or more previous IVF cycles that failed

In our IVF clinic, we use assisted hatching on just about all cases – because we think it increases the pregnancy and delivery rates.

For the original page, see http://www.advancedfertility.com/hatching.htm

I’m pretty sure that assisted hatching can be used whether you are doing a 3-day or a 5-day transfer, but generally not for 2-day transfers (the embryologists say the embryo is usually too small then and there’s a risk it could break up if the zona is punctured). With a 3-day transfer, they will do this immediately before they put your embies back. With  a blast (5-day) transfer they would presumably do the AH on day 3 before putting the embryos back for their last two days of development. Anyway, these are just a few things to discuss with your specialist.

As for risks, my understanding there is a very very small increased likelihood of conjoined twins if assisted hatching is used. My own specialist told me that, although this was statistically true, the reality was that the increased chances are so miniscule that they don’t really have practical significance.

Who should be treated with assisted hatching?

The most commonly used indications for assisted hatching with an in vitro fertilization case are:

  • Age factor – Couples having IVF with the female partner’s age over 37
  • Egg quantity and quality factor – Couples in which the female’s day 3 follicle stimulating hormone (FSH) level is elevated
  • Embryo quality factor – Couples having IVF with poor quality embryos (excessive fragmentation or slow rates of cell division)
  • Zona factor – Couples having IVF with embryos that have a thick outer shell (zona pellucida)
  • Previous failures – Couples having IVF that have had one or more previous IVF cycles that failed

In our IVF clinic, we use assisted hatching on just about all cases – because we think it increases the pregnancy and delivery rates.

Conflicting expert opinions – how do I know who’s right?

Saturday, April 10th, 2010

So, you finally plucked up the courage to go for a second opinion (see also When and how should I seek a second opinion?) and guess what – now you have two or more well-qualified and plausible experts with compelling arguments telling you to do the exact opposite. Maybe one cites empirical research and another doesn’t; maybe they all cite different research. Maybe one sides with the ‘mainstream’ while the others are mavericks – who’s more credible? Who should you trust?

Here’s a classic example encountered by women in their late 30s and 40s with elevated FSH or low AMH (which means they have diminished ovarian reserve – very few eggs left, on the fast track to early menopause). [This example may not relate to your case specifically, but the reflections about how to deal with it are definitely generalisable.]

Specialist A: Once your Day 2/3 FSH is over [insert cut-off; some say 10, some say 12, some say 15, some say 20] the odds of pregnancy through IVF are so incredibly low that IVF is a waste of time altogether, so we would actually not treat you unless you plan to use donor eggs. Just move on already!

Specialist B: Your FSH is elevated, which means you will be a poor responder to stims (Gonal F, etc) and your odds will be lower than other patients your age. It’s like your ovaries are old and going deaf, so we have to give you a very high dose of stims (i.e. ‘shout’ at your ovaries) to get them to wake up and produce any eggs at all. So, I would recommend we put you on maximum dose stims and see what happens. If that doesn’t work we will try mega mega doses.

Specialist C: Your FSH is elevated, you will be a poor responder, but actually, large doses of stims for women like you will often cause your ovaries to shut down and not respond at all. If they do respond, the dose is so high that you will end up with fried eggs that are unlikely to result in a live birth anyway. No, your ovaries are like an old squeaky violin that has to be coaxed gently into life so that it sings the sweetest tune  it possibly can. I recommend a very low-stim IVF, IUI or TI (timed intercourse) cycle with either very low stims right from the start, or just starting with no stims and letting your own [already elevated] FSH drive follicle growth before adding a ‘tiny boost’ to help things on their way.

Yes, intelligent people do hold different views. The field is still growing and not everything is cut-and-dried (and  actually, never will be). They all have theory and evidence to back their explanations …

Specialist A will cite a ton of empirical research showing the inverse correlation between FSH levels and IVF response (number of eggs produced) and success rates. No argument with that.

Specialist B will cite studies showing that the higher the dose, the more eggs patients produce, and the more eggs you retrieve the higher the success rates. It’s a numbers game.

Specialist C will say ah yes, but what those studies don’t show (but mine do) is that, although you get more eggs from higher stims, in older women and those with high FSH, those eggs are of lower quality, less likely to fertilise, and most importantly, less likely to result in live births.

They are all speaking the truth based on what they have seen and read; they all have evidence and experience to back their claims. So, how do we weigh up conflicting arguments and figure out what makes the most sense for us?

First, let’s talk about the big studies (either randomised experimental trials or retrospective studies) showing that Protocol X works (or, helps) better than protocol Y. These are very important to understand, but what YOU need to consider is not “does it help” on AVERAGE across a large study of all sorts of different women; the real question to have in mind when you read (or, discuss with your dr) such research is WHOM does it help (what age, dx, individual characteristics), and under what conditions? And, will it help ME with my unique constellation of age, treatment history, diagnosis and other characteristics?

There are some aspects of fertility treatment that are so nuanced, unpredictable and idiosyncratic that the reality is NO-ONE is ever going to get “the” answer through large study research. Once you’re past the relatively well-established big picture stuff and trying to individualise protocols based on what you see and what you’ve seen in the past, it’s less about big picture science and hypothesis testing and more about human judgement and pattern recognition.

When we’re in this territory, fertility treatment is less a “science” and more of an “art” or a “craft”. You’re having to trust pattern recognition, judgement, intuition and instincts because the research just isn’t there to the level of detail you’d need to be able to make a call. Also, many of the cutting-edge treatments have no more than a plausible theory and a few success cases; the research needed to fully test them is still in progress or may be years away or may never be done because they help such a small segment of the ttc population – but they may still help (see also New and “untested” treatments). Just about all of my ttc journey was in that murky domain -  I was too specific a mix of age, diagnosis and treatment history for enough large studies to have been conducted to clearly indicate what would work in my case. There were no easy answers – there wasn’t a clear right or wrong because the research out there could only predict what would happen across a large group (that included many women NOT like me), not what would happen in MY case (or cases very similar to mine).

When you’re in instinct and judgement and pattern-recognition territory, the only things you can do are arm yourself with as much knowledge as you can muster, listen to the instincts and judgement of the people who have had more experience with cases specifically like your own, and listen to your own instincts and debate these back and forth with your specialist(s). It’s a crap-shoot, but some people have a knack for this stuff …

Or, the simple version for the example above (please just insert your own dilemma and the answer is likely the same): high stims work for some people; low stims work better for others. Which are you? Well, you won’t know until you try because the studies have been done on a huge range of women, only a fraction of whom are like you in various ways – and none of them are exactly like you. So, research like crazy to try and figure out what seems promising for women and couples most like you, and when it’s still not clear how to choose among various plausible options on your shortlist, go with your gut.

See also: New and “untested” treatments for some thoughts about which new-fangled ideas to consider seriously.

How do we know when to move on?

Friday, April 9th, 2010

“Moving on” can mean a lot of different things:

  • stopping IUI or IVF and switching to ttc naturally and/or with alternative medicine
  • opting for donor egg IVF (or donor sperm IUI or IVF) instead of trying more with your own eggs (or sperm)
  • trying with donor embryos (these are frozen embryos left over from other couples’ IVF cycles who have had success and have finished building their families)
  • pursuing adoption (domestic or international) or foster parenting
  • deciding to live child-free or (in the case of secondary infertility) with just the one(s) you have

But how do we know when it’s time to move on to the next option? And, when should we (and when should we NOT) be making those choices?

It might help if I share a bit of my story from the very lowest points of my ttc journey.

I think one of the worst parts of my whole ttc journey was right when we found out that our miracle natural conception after 2 years ttc#2 was in fact, at 7 weeks, a blighted ovum. At that point I was almost 42, where they say your fertility falls off a cliff, and I really felt like this pregnancy was my last chance slipping through my fingers. I had six failed IVFs under my belt, 2 cancelled for poor response, 4 that had gone to egg collection, a total of 9 embies transferred, no leftover frosties, 4-5 other natural conceptions that were chem pgs (mostly) and now this 7-week miscarriage.

Every BFN and especially every loss was a major low point for me. Not only did life/reality totally suck; estrogen levels at the end of a failed cycle or failed pregnancy are in freefall and that makes anyone feel really really crappy. So, the one thing I learned is NO negative decision making while climbing out of the vortex. But once out …

It’s a very personal decision about how much more of this you can take. The costs are high on every level (physical, emotional, financial), and you lose major chunks of your life clawing through this stuff. Your career suffers, relationships with friends and family suffer, and if you have one or more children already there’s this awful feeling that you are losing precious time with them while you are consumed with cycles and blood tests and scans and peesticks and phantom pregnancy symptoms and researching next options. And infecting them with the sadness and depression that comes with a long struggle with infertility.

As one of my NZ board buddies pointed out, it is really important to sit down with your partner regularly through the ttc process (and with a good counsellor, if you choose) and ask yourselves some very difficult questions such as:

  • What does my partner want, what do I want, how do we resolve things if there are different goals? (this can change at different stages of the process)
  • What’s the impact of this treatment (or yet another treatment) on our relationship? How do we stay strong together as a couple?
  • What’s the impact on our lives if we don’t have children after [insert number of] IVF/treatments? What’s the vision for our future without children?
  • [and I’d add one for the secondary IFers] What’s the impact of this treatment (or yet another treatment) on any child(ren) we have? What is the cost to their quality of life of having their parents going through this gruelling process? How well are we ensuring they get the love and nurturing they need while we try for a sibling? How long/often can we keep trying before the negative impact on our child(ren) makes it no longer worth it?

The financial drain is very stressful on top of everything else. It was hard to take on much work while having to avoid travel during only partially predictable cycle dates, so income can be down anyway. We were lucky to get some help from family and the bank manager, but everyone has a limit to how far they can stretch before they are really in trouble. My philosophy was that I could make money after menopause but not eggs – and that any resulting child would cost far more over a lifetime than a few IVFs. I needed to get to 50 with no more regrets, whichever way it went. So we kept on, making the decision after each cycle – at least a couple of weeks after the BFN or the D&C (no sooner).

For me, the decision about whether to move on was all about whether I thought we were out of plausible ideas and just spinning on some hamster wheel. But even after 6 IVFs I still felt like we had ideas to try that we hadn’t tried before. Thankfully we had a specialist who would work with us to try anything plausible. And go figure, after no success in 2 years age 40 to 42+ (and high FSH to boot), IVF#7 at age 42.3 gave us not just one baby but fraternal twins.

Unfortunately, though, success isn’t going to be the outcome for everyone who persists. I knew I had to be at peace with eventual failure. I wanted to look back after menopause and know that we had tried everything that we could, and that we did it without sacrificing our relationship with the one we were already so lucky to have (and who we were told would never happen either).

Early on in the process, after my first IVF at age 40 was unceremoniously cancelled for ZERO response, my first thought was “Oh well, that protocol (microdose flare) didn’t work; now there’s really only one other for me to try (antagonist). If that’s a zero response too, then that’s that for IVF. Simple.” If that had happened, the choice would have been very clear to me – ditch the IVF and try naturally with acupuncture, herbs and supplements (we’d 99% decided against the other family building options already; my tubes were fine and we had only mild MFI). In some ways that scenario felt like a relief because it was unambiguous and the treatment less taxing on many levels. But on IVF#2 I did actually GET a response, though not a great one. From then it was a case of hunting for the Goldilocks (just right) protocol, and giving up on IVF once it was clear we’d exhausted all the plausible ideas (or our emotional capacity for going through the process).

It’s a very personal decision for each person or couple about when to move on and which options you would consider. My advice (and I know a lot of people would advise the exact opposite) would be to NOT decide in advance how many cycles you’ll do or whether a particular cycle is definitely your last shot at anything – it puts a LOT of stress on the so-called “last” cycle.

Another very good read on this topic is Janey’s post on the Fertility NZ blog. Janey’s been through the IVF mill and is reaching the end of the journey, but unfortunately without a baby in her arms. Here are some snippets from her very real reflections …

We are all at such individual, personal stages in our journey with creating our own families. This could be trying IVF for the first time, or the sixth because you’re a “poor responder” – how dare they label us that – or having had a miscarriage, or having realised that it’s time to accept our shape of ‘family’ might include dogs, step children, and a trips to India. I’m at the later end of the spectrum. It’s immense.

I no longer want to hear about people getting pregnant, or want to support another friend through IVF. It’s too heartbreaking. The lovely people at Fertility NZ have compassionately identified this, and are saying, “That’s okay”. How nice to feel valid, in a journey that is anything but valid or fair.

=> Read Janey’s whole post and the 30+ comments from women in the same boat.

As another board buddy said, “Getting on the infertility treadmill is easy – its when to hop off that is the problem.” So true.

What is DHEA?

Friday, November 27th, 2009

DHEA (Dehydroepiandrosterone) is a naturally occurring hormone in our bodies which depletes as we get older. Here’s some info quoted from a UK site (<– click the link for more detailed info):

Description: DHEA, also known as “the mother hormone”, is produced by the adrenal glands and is the most dominant hormone in the body. The body converts DHEA into whatever hormone it needs (i.e. estrogen, testosterone, progesterone, and coriconsterone) In both sexes, blood levels of DHEA peak at 20. Thereafter, the levels steadily decline throughout aging, more dramatically with child bearing and with menopause. By eighty years old, the body only has 5% of the DHEA levels it had at 20! Many age-related conditions appear associated with lower than average levels of DHEA.

OK, so what’s all this got to do with infertility?

Dr Norbert Gleicher and colleagues at the Center for Human Reproduction in the States stumbled across the idea when a poor responder over 40 patient of theirs started having better and better responses to IVF – she had been secretly taking DHEA. Since then they (and others) have conducted some randomised trials and have seen some promising results in poor responders.

Here is a CBS News video of Dr. Gleicher, that older patient of his and a couple of other doctors talking about DHEA.

Want more info? Here are a few useful links to some of the research (you can find more through Google Scholar):

OK, sounds like a miracle cure – should I take it?

It does sound amazing, but the reality is that it doesn’t help all poor responders. In fact, the poor responders I have spoken to over the years have seldom had such obvious beneficial effects. Also, it does have some downsides for some people. Here are the ones I’ve become aware of:

  • Anyone who has higher than normal androgen or DHEA-S levels should definitely NOT take it because it can exacerbate these issues. Be especially cautious if you have PCOS or PCO, or any facial hair issues. Make sure you get DHEA-S and androgen levels measured first by your doctor and discuss the idea with him/her thoroughly to decide together whether it’s right for you. You have to do this anyway because it is only available on prescription in New Zealand. And even then, you can expect it to cost about $75/month.
  • If you’re under 40 then your DHEA levels may already be normal, so you wouldn’t benefit from it. It’s really only useful for those whose levels are seriously depleted.
  • Anyone who has a history or risk of ovarian cancer should not take it.
  • Some women have experienced hair loss and wacky cycles after taking DHEA.
  • Some women get too high levels of testosterone after taking it, and can end up with facial hair and deeper voices.
  • It can cause sleeplessness, especially if you launch straight into a high dose. If your doctor does agree and prescribes it, ask to start on a lowish dose (like, 25mg), take this in the morning (not the evening), and let yourself get used to it for a week or two before increasing the dose.
  • If you are taking Dexamethasone during your stim cycle to enhance response or help with implantation, the general advice is to stop DHEA before you start Dex because they apparently work in opposite ways.

So, are there any upsides? I took it myself for a couple of years, and had some upsides (also reported by others). The flipside of the sleeplessness thing is that it can make you feel like you have more energy. I also found it seemed to increase my metabolic rate, so I lost a couple of kilos while on it. But did it help my response to IVF? Well, not obviously, but it certainly didn’t hurt.

To sum up, the jury’s still out on this one. Do your research, talk to your doctor, get your DHEA-S levels tested first before agreeing to try it. Dr. Gleicher says that he sees many spontaneous natural pgs among women taking it while waiting to start IVF, so don’t wait until you start cycling. Many say it takes about 4 months before the effects really kick in. If you notice any adverse effects, talk to your dr straight away about whether you should stop it or reduce the dose. Make sure your DHEA-S and androgen levels are retested regularly to make sure they aren’t going too high.

What are the main IVF protocols used in NZ?

Wednesday, September 23rd, 2009

Why is this important?

First, it’s good to know roughly what’s out there, and that there is more than one option, so that you can get your specialist to explain why this one and why not that.

Second – if you don’t do well on one protocol you may do fine on another.

Some women will need a few tries to find their “Goldilocks” (just right) protocol, but because most of us have only limited finances and stamina, it’s important to make sure you’re satisfied the first one is a good choice for you.

Basically there are three main protocols used by NZ clinics (plus a few variations, which I’ll try to add later):

1. The ‘long’ protocol (default for young women and those with normal FSH; not generally used on high FSHers unless they are quite young, and seldom on anyone over 40 because it can easily oversuppress those with diminished ovarian reserve).

Buserelin for about 10 days to downregulate (put you into temporary menopause), then the Buserelin dose is lowered and you start stims (Gonal F injections), stim for about 10 days with scans and blood tests every 2-3 days. When your follies are ready, you are instructed to take a trigger injection and turn up for egg collection about 36 hours later.

2. The microdose flare – usual starting protocol for high FSHers and women over 40. It’s less likely to oversuppress poor responders than the long protocol.

Usually but not always starts with a course of BCPs (birth control pills) for about three weeks, then you stop for a couple of days, then start your microdose course of Buserelin (this gives your ovaries a kickstart or ‘flare’), then a day or two later you start your stims (Gonal F injections). As with the long protocol, you stim for about 10 days with scans and blood tests every 2-3 days. When your follies are ready, you are instructed to take a trigger injection and turn up for egg collection about 36 hours later.

3. The antagonist protocol – another option for high FSHers, poor responders and older women. Often the first choice protocol for these women, but in NZ it’s typically tried only after the flare protocol has given a weak response because the drugs are cheaper for the flare.

Usually starts with a mild pre-cycle suppression course of estradiol valerate (E2V) from CD21 or 7dpo the previous cycle (you can ttc on your own the previous cycle; this won’t affect a pregnancy); when AF (your period) arrives this is counted as Day 1 and you may be asked to go in for a baseline scan to check that you have no cysts, your antral follicles are ready to go and no big dominant follicles; on CD2 you start stimming, having bloods and scans every 2-3 days. When your lead follicle reaches 14mm, you start Cetrotide (the antagonist that stops you ovulating too soon). When your follies are ready, you are instructed to take a trigger injection and turn up for egg collection about 36 hours later.

There’s another called the Colorado protocol, which is a variation on the antagonist. I don’t have all the details on this and how it’s done in New Zealand, but if someone would like to email me or post it as a comment, that would be a big help!

If you are a poor responder, have high FSH, low AMH, a low antral follicle count, or have been told you have diminished ovarian reserve (DOR), follow this link to check out protocols used for poor responders.

And here’s another link in case you want to know more about the various IVF, IUI and TI (timed intercourse) cycle medications and what they do.