Archive for the ‘TI- Timed Intercourse Monitored Cycles’ Category

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.

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.

When and how should I seek a second opinion?

Thursday, October 15th, 2009

Suppose you had a friend who was grappling with a cancer diagnosis and kept wondering whether his/her specialist had really considered all the possible treatment angles that might work. Suppose he or she had been receiving some treatment but there hadn’t really been any sign of progress. What would you advise? Probably a second opinion, right?

For some unknown reason, fertility patients seem to struggle with this notion that it’s somehow disloyal to seek a second opinion. Yes, it is awkward. But actually, it’s just good common sense if there’s any little voice inside your head saying “maybe there’s a better way …”  I know several women/couples who have switched specialist within the same clinic and have really agonised over how they are going to “break up with” their initial specialist. But the reality is this happens all the time, and people need to find the fit that’s right for them. My local clinic (FAA) actually makes that transition incredibly smooth and most of the drs are perfectly happy when it happens. [Actually, some may be relieved about getting rid of a “difficult” patient! ;)]

Even if you’re not actually switching specialists, it’s perfectly reasonable to seek out a second opinion if you want to. If you’re publicly funded you may have to pay for the second opinion consult, but that’s money well spent if it’ll give you peace of mind and/or some good ideas that can get you closer to building the family you want.

Remember, just as in any other profession, each individual specialist has certain diagnoses and treatments that they have a particular interest in and more experience in treating. Some gravitate toward the more straightforward cases (early 30s, no tubes, standard protocol, easy success); some specialise in particular issues (endometriosis, PCOS, thyroid problems); some are really passionate about taking on the really challenging cases (women over 40, poor responders, egg quality problems). It’s a good idea to ask around about who’s had success with cases like yours. And that’s a good place to start for a second opinion. Just think, women/couples in the States fly 5 hours from coast to coast seeking a second opinion; we are incredibly lucky that even the other end of the country isn’t that far away! And if travel is really a problem, you can often book a phone consult.

Over the years, one thing I’ve noticed is that the truly professional specialists I’ve spoken to have NO problem at all with my seeking a second opinion. They support my being proactive and are very happy to listen to any ideas I glean from those other consultations. They don’t let egos get in the way of my treatment. While working with my own specialist, I got a copy of all my notes and did a phone consult with a specialist in the States who’s considered the #1 go to guy for women with my particular diagnosis. My specialist in NZ was like nooooo problem – and was very open to the ideas I came back with. We did, of course, have a healthy debate about which of the ideas seemed to make the most sense in my case, but the main thing was that we had that discussion and we made some good decisions together about what to try next.

How do you know you should seek a second opinion?

Well, everyone’s different. For some people, it’s when they’ve just had a failed cycle, they can’t afford to do more than about one more, but the specialist is suggesting just going with the same again. For others, they’ve tried discussing other ideas with their specialist but feel like these aren’t being taken seriously or at least the reasons for not trying these things aren’t being adequately explained. For me, it was feeling like we’d already discussed and tried all the ideas we could think of together, so I needed a fresh perspective, a new source of ideas. Whatever the situation, if there’s a little voice in your head wondering whether you and your specialist have adequately explored all the possibilities, that’s a sign you might want a second opinion. It could just end up confirming what your current specialist is telling you, in which case that’s also useful because it eliminates doubts that you’re doing the right things.

If you think you might want to get a second opinion on your case, here’s what to do:

  1. Get a copy of your notes from the clinic so you know exactly what protocols you have tried already, any testing that’s been done, how you responded to treatment (including E2 levels, follicle sizes, the embryologist’s ratings of embryo quality, etc).
  2. If you can, make a 1-2-page bullet point summary of your history and any testing. This makes it a LOT easier for the new dr to get up to speed quickly on where you are at.
  3. Ask around (e.g. on the Everybody BB’s Infertility forum) to find out which drs at which clinics have had success with your particular diagnosis and history.
  4. Call that dr’s clinic and speak with his/her receptionist; ask for an in-person or phone appointment; ask where and how to send your summary/notes/file.
  5. You don’t have to formally tell your current specialist that you’re seeking a second opinion, but you’ll probably end up informing his/her nurse or receptionist when you request a copy of your file/notes. It’s a courtesy to mention it, but if it’s causing you anxiety then don’t force yourself to. The specialist will understand.
  6. If you are doing a consultation with someone who works at another clinic from your ‘home’ clinic and if you like what they are suggesting as a new plan, discuss with them whether it would be feasible/advisable to (a) ask your current specialist to follow a new protocol; (b) cycle at your local clinic but with the new specialist either calling the shots or providing advice to your own specialist; (c) travelling and doing the whole cycle at the new clinic; or (d) doing egg collection and transfer at the new clinic, but monitoring (ultrasound and bloodwork) locally. All of these options have been done around the country at one time or another.
  7. Don’t worry too much about having to persuade your current specialist to try something new – quite often the specialists will just get in touch with each other and work out how best to work together. Ask your ‘second opinion’ specialist what he/she thinks is the best way to handle this. The politics and the details of this shouldn’t be your problem – you are going through enough stress already!
  8. Don’t worry too much about the ‘disloyalty’ issue either. You have the right to expect specialists (and any healthcare provider, for that matter) to be professional about second opinions and NOT to make you feel guilty about seeking one out. If you find someone is not being particularly professional about it, that tells you more about them than it does about how you handled it. Your priority is to get a baby/family out of this, and their priority should be to help you achieve that dream. The specialists won’t be a part of your life forever, but your babies will!

What low-tech things can we do to increase our odds?

Saturday, October 3rd, 2009

Maybe IUI and IVF aren’t an option for you and you’d like to try and increase your odds generally while ttc naturally. Or maybe you’re gearing up for – or in the middle of – IUI or IVF treatment. Or on one of those interminable waiting lists!

Is there anything you can do NOW that can help improve your odds?

Yes! There are a number of things you can do to get your bodies readier and more likely to succeed than they currently are for conception and pregnancy. Many of these take several months or more before you see the full benefits, so remember, it’s never too early to start AND it’s never too late to start because every little bit helps! If you’re on a waiting list for IVF (or waiting to get on one!!), this is a fruitful way to make the most use of your time.

Things men can do to improve sperm quality

Let’s start with the guys, for once! Get them out of those briefs and into boxers for starters, and no long spa baths or sweaty bike rides!! Sperm don’t like being overheated. Guys are also supposed to get their BMIs in a healthy range – usually quoted as 19-25, but bear in mind the number can be misleading if you are athletic and carry a lot of muscle. A hilarious recent example is that about 25% of the All Blacks are considered obese and the rest are ALL overweight!

There are also a bunch of supplements that are known to improve sperm quality. Here’s the list that was recommended to us by a naturopath:

  • a multivitamin called V2000
  • CoQ10 100mg (the more bioavailable gel type)
  • Vitamin C 1000mg/day (twice a day if he had a cold)
  • Vitamin E 200mg w/Selenium
  • Flax seed oil 2000mg I think
  • zinc complex (at night)
  • L-carnitine 500mg

I’ve also seen several people also recommend Vitamin B complex and folic acid (800mcg). And most naturopaths would also advise giving up smoking (anything!!), cutting right back on drinking and cutting out coffee (even decaf) if at all possible. Tea is better, green or herb/fruit tea even better.

Does it work? Well, after our IVF#3 failed my DH was so disappointed he went on “vitamin strike” for 3 months. By the time we tried IVF#4 his count had dropped from 90mil/ml to 18mil/ml. After that, no more vitamin strike!!! 😉

What can women do to improve their odds of conception?

The clinics will give you a few basic tips here – cut RIGHT down on coffee and alcohol, stop smoking and other drugs, exercise moderately three times a week, and aim to get your BMI between 19 and 25 to maximise your odds. [However, bear in mind that BMI is a bit overly simplistic for some body types, e.g. very tall women or those who carry a lot of muscle.] Click here to access Fertility Associates’ advice on boosting your fertility.

Acupuncture and Chinese herbs can also be a great way to prepare yourself for IVF. As you can see from this summary of research on acupuncture and fertility, it can be used to treat all sorts of conditions, from endometriosis, PCO/PCOS and sperm counts/quality to advanced maternal age, high FSH and poor eggs. For more information about how and why it works in general and for various conditions, find related blog posts by clicking ‘Acupuncture and Chinese Medicine’ under Topics (in the left column of this page).

What about supplements for women? Well, there is a huge and overwhelming range available depending what diagnoses you are struggling with, so probably the best advice is to see a good fertility naturopath to help you pick out the best mix for you. Having said that, here are a few that seem to be recommended in many/most cases, from what I can tell …

  • a good multivitamin
  • folic acid, at least 800mcg, but if you’re ‘older’ or have had multiple losses or implantation failures, ask your specialist to prescribe you the 5mg dose
  • Vitamin C 1000mg/day, twice a day when you have a cold
  • Vitamin E with Selenium
  • Coenzyme Q-10 (aka CoQ10) 100mg, preferably the more bioavailable gel caps
  • Fish oil or flax seed oil, 2000-4000mg/day
  • zinc complex
  • iron supplement if your levels are a bit low (ask your GP to test)

For an additional truckload of ideas, follow this link to read about low-tech things women can do to increase the chances of conception. And if you fish around that site you will find a lot more info about low-tech methods for couples and some of the basics of conception (most of which you’ll already know, of course). Unfortunately their tips for guys was down when I last checked, but I’ve emailed them about it and will add a link to this blog if it comes back online.

Our IVF/IUI/TI cycle just failed … What should we be asking at the review?

Thursday, September 24th, 2009

After all the waiting to GET on the waiting list and then all the waiting ON the waiting list, finally you got to try the “big guns.” You’ve somehow overcome your fear of needles, vaginal scans and then (for IVF) the dreaded egg collection procedure; you’ve survived the harrowing 2ww … and it’s a BFN. Or a chemical pregnancy. Or a pregnancy and then a miscarriage.

After all that anxiety, fear, hope and expectation, a failed cycle is just devastating. You’re booked for a review appointment with your specialist – but what should you be asking about now?

The most important question, of course, is WHY your cycle failed. There could be many possible explanations, some of which are just guesses and some of which are backed by concrete evidence or could be investigated further.

You don’t want to go through the expense and stress of another IVF cycle and only afterwards find out there was something else you should have addressed first. Here’s a quick list of other things you should be sure to have checked out if you haven’t already:

  • Male Factors. A full semen analysis is necessary – not just counts/motility/morphology but also tests for antisperm antibodies and SCSA (tests for DNA fragmentation).
  • Polyps and Fibroids. Uterine polyps and fibroids, even if they’re small, can influence the menstrual cycle and can interfere with implantation. They can typically be seen via ultrasound and can be removed through a relatively simple surgical procedure.
  • Thyroid Issues. Thyroid issues can impact fertility and need to be ruled out as a contributing factor. A thorough thyroid test needs to include TSH, free T3/T4 and anti-thyroid antibodies.
  • Ureaplasma. Ureaplasma is an infection for which you should be tested. “Ureaplasma may cause the formation of sperm antibodies and an inflammation of the uterine lining, either of which may interfere with implantation of the embryo” (Source)
  • Factor V Leiden. Testing for Factor V Leiden is also important. “Factor V Leiden is a relatively common hereditary blood coagualtion disorder and can lead to stillbirth or unexplained recurrent miscarriage” (Source)
  • Hysterosalpingogram (HSG). An HSG is a test to determine whether the fallopian tubes are open. Even if you’re doing IVF this is important because you could have a hydrosalpinx, which is a blocked tube that leaks toxic fluid into the uterus and can affect implantation. (More info)
  • Recurrent miscarriage/recurrent implantation failure testing panel. In New Zealand, the usual procedure is to run a set of blood tests (on the female partner) such as:
    • Coagulation screen
    • Thrombophilia screen
    • Autoantibody screen incl.
    • antithyroid antibodies,
    • anti-gliaden antibodies
    • Factor V Leiden
    • Karotype
    • MTHFR mutation
    • Anticardiolipin antibodies
    • Lupus anticoagulant
    • … and a karotype for the man

Follow this link for a very comprehensive list of possible causes of recurrent miscarriage that can be investigated systematically if you need to do some more serious digging.

  • Endometriosis. If you have period pain that requires more than a couple of Panadol (or any other of the possible symptoms of endometriosis), ask for a laparoscopy to investigate. Endometriosis is quite common and often missed or misdiagnosed, e.g. because women think their period pain is normal. For more information, check out Endometriosis New Zealand’s excellent website.

OK, nice laundry list, but what should I be asking my doctor?

Before your review appointment, if you did IVF, call the embryologist who worked with you during your cycle and ask him or her what they thought about the quality and maturity of your eggs, the fertilisation rates and the quality and development of your embryos. If you can, it’s best to do this soon after (or, the day you go in for) embryo transfer so that it’s fresh in the embryologist’s mind. Pump them for any information you can get.

When you see your doctor, start with an open-ended question about what he or she thought went well in your cycle and what didn’t. Summarise what the embryologist told you as well and ask the doctor to comment.

Your next question should be around the various other possible causes of cycle failure listed in the bullet points above. How many of these have we eliminated as a possible cause, how did we do so, and which of them should we investigate before leaping into another cycle? Make sure you study these beforehand and think whether you recognise any relevant symptoms.

You may find yourself in a situation where the doctor pronounces you have an egg quality problem. Now, this is a difficult one because, from a Western medicine perspective it’s seen as untreatable and just the hand you’ve been dealt. Further, this is really little more than an “eyeball” assessment, assuming you haven’t done a PGD (preimplantation genetic diagnosis) IVF cycle where the embryos are actually tested for chromosome abnormalities. Visual egg and embryo quality is correlated with chromosomal normality/abnormality and pregnancy rates, but it isn’t a direct assessment of these things. You can definitely have great looking eggs/embryos that are abnormal. And there are a few instances where very scrappy, sad-looking eggs and embryos turn into perfectly normal babies, but unfortunately not very often.

If you do get the “bad eggs” speech, there are a couple of questions you should raise. One is whether you can try a different protocol that might be better suited to your delicate eggs. For example, some specialists argue (and have evidence) that higher doses of stims can “fry” some women’s eggs, so that a lower dose may be more gentle and damage them less. [I personally had a dramatic improvement in embryo quality when I dropped my dose from 450IU to 150IU, and I know others who have experienced the same.]

The other thing to insist is that “bad eggs” isn’t just assumed to be the ONLY cause of your failure. Even if it’s true and you are looking at moving forward with donor eggs, you need to be sure you don’t have uterine or autoimmune issues or endometriosis (etc) that could jeopardise the success of that cycle.

Most fertility specialists in New Zealand don’t really buy into the idea of alternative medicines, but if you’ve been given the “bad eggs” or “old eggs” speech, I’d strongly recommend reading the following piece by Dr. Randine Lewis about the Chinese medicine perspectives on “poor egg quality” and whether there’s anything you can do to address it.

This website/blog also has several posts on acupuncture and Chinese medicine – see the menu at left to find items on that topic.