Posts Tagged ‘Questions to Ask’

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!

We’ve had multiple losses – what should we be asking about?

Wednesday, October 14th, 2009

“We seem to have no trouble getting pregnant, but we’ve had several first trimester losses.” Or, “We put back good-looking embryos every time, but they just don’t stick.” If this sounds like you, here are a few ideas you might want to discuss with your doctor.

Miscarriages can be caused by any one or more of the following factors:

  • structural
  • hormonal
  • immunological/autoimmune
  • environmental
  • genetic

Let’s start (as the drs often do) with the fairly basic hormonal tests. One of the first that’s included in a fertility workup is testing progesterone in the luteal phase. Most drs order this for CD21 (Day 21 of your cycle), but actually you should really have it done at 7dpo (7 days past ovulation). Of course, 7dpo=CD21 if you ovulate on Day 14 of your cycle, but if you usually ovulate late or early, or if it’s unpredictable, you might want to track your ovulation using BBTs (basal body temperatures) and go at 7dpo. If your progesterone (P4) levels aren’t high enough, you may need progesterone supplements (like utrogestan pessaries) after ovulation (O). Some specialists believe this is a VERY common problem with older women and that if you’re over 40 and ttc naturally you should take P4 after O every cycle.

Another important one to test early, especially if you have any family history or tend to feel tired a lot, is thyroid conditions. Hypothyroid (underactive thyroid) does pop up reasonably often as a cause for conception and sometimes miscarriage problems and is easy to test for. You can ask your GP for this if you’re not seeing a specialist.

If you’re ttc naturally you should also check whether you have a luteal phase defect, i.e. once you ovulate it takes fewer than 12 days for AF (your period) to arrive. You can usually figure this out by charting your basal body temperatures (BBTs) – and a really good site for learning how is Fertility Friend. Again, if your LP is too short, this can be easily fixed with progesterone support after O.

There’s a panel of blood tests you can ask for that are used to diagnose some of the possible causes of “recurrent pregnancy loss” (RPL) or “recurrent implantation failure” (when those embies just don’t stick). Broadly speaking, they cover three categories of issues – autoimmune issues (your body may be rejecting embryos as foreign bodies), clotting issues (not sure the exact mechanism for this, but if your blood clots too much, this makes pregnancy loss more likely – some clotting issues are caused by autoimmune problems) and some genetic issues. Here’s the list that we were sent for, and I think it’s a pretty typical list for New Zealand (some countries like the States seem to test for half a dozen kitchen sinks, several of which aren’t available in NZ):

  • 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 DH (who gets off easy, as usual).

Probably the next logical step is to get either a saline sono (ultrasound during which they squirt saline solution into your uterus to help them see better) or an HSG (similar, but it’s an X-ray procedure where they shoot iodine dye into your uterus and can also check whether you have blocked tubes). Either of these should tell you whether you have any structural issues in the uterus that might be preventing you from achieving or holding onto a pregnancy. Examples include uterine polyps, fibroids, scar tissue, and an unusual shaped uterus. The most likely issues can often be treated with some fairly minor surgery.

The main environmental causes of miscarriages are not usually tested for, but things you should look around you to check your exposure. Some to keep an eye out for include lead, mercury, organic solvents and ionising radiation. Other more common culprits like cigarettes, alcohol, coffee and other drugs should be cut right out (or, down as much as possible) while ttc. Some naturopaths will do things like send a sample of your hair for analysis for heavy metals, which can highlight things you are exposing yourself to without knowing it. They also advise avoiding those forms of radiation and related exposure that we are not often aware of. These include long-haul flights (which expose the body to as much radiation as a full-body X-ray, or so they say) and keeping a cell phone in your pocket right next to your ovaries – think about it!! Well, who knows which of these various things are real causes, but if you want to make sure you try everything you can to prevent another loss, you’ll probably do what I did and take the ideas pretty seriously.

But what if my specialist won’t run all these tests?

This is quite a common comment from a lot of women/couples dealing with RPL (recurrent pregnancy loss). It may be frustrating, but there is another way to look at this. OK, you may not be able to test for the entire kitchen sink, but maybe you can ask your specialist to consider treating you as if you did have several of these issues going on but they just may well be undiagnosed. That may sound nuts, but there are actually quite a few low-tech options you can ask about that many doctors will agree fall into the “won’t hurt, might help” category. These include:

  • low-dose aspirin (usually 100mg/day) – addresses clotting issues
  • high-dose folic acid (4-5mg/day) – helps prevent neural tube defects
  • progesterone support (usually Utrogestan pessaries) after O on every cycle you are ttc
  • low-dose estrogen support after O too (2mg estradiol valerate, for example)

If you’re doing IVF, each cycle is a bit more high stakes, so you may be able to push for a bit more of a kitchen sink approach. Some other things that people are often allowed to try even if there hasn’t been a definitive diagnosis of a particular cause for repeated losses/failures include:

  • progesterone shots instead of (or as well as) the pessaries – for after egg collection
  • a low-dose steroid such as Dexamethasone – to address any undiagnosed immune issues
  • Heparin shots – Heparin is a blood thinner, so this also addresses clotting factors

Finally, don’t forget that there’s good evidence that acupuncture improves pregnancy and live birth rates for patients undergoing IVF – and good reason to believe this is also true for couples trying to conceive naturally or with IUI. Click on the category Acupuncture and Chinese Medicine in the left-hand column to see more posts on this topic.

Choosing a good acupuncturist

Monday, October 12th, 2009

When I started ttc over the age of 40 and was gearing up for IVF, I decided I should start acupuncture to help maximise my chances. Boy, have I learned a few things since then!

How to tell if your acupuncturist is NOT a good choice:

I initially chose an acupuncturist who was quite close by, whom I eventually decided wasn’t a good choice. To help others choose a good one, maybe it would help to describe what made me think so …

  1. Didn’t ask me what day of my cycle I was on when I went, and didn’t alter acupuncture points according to where I was in my cycle.
  2. Did not have a clear understanding of IUI/IVF, i.e. what happens at different parts of the cycle.
  3. Didn’t seem to have a clear understanding of what happens in a natural cycle, e.g. when implantation occurs (7-10dpo).
  4. Wasn’t able to explain clearly what my Chinese medicine diagnosis was, or the rationale behind the treatment plan. [This wasn’t an ESL issue – the person was a born and bred kiwi.]
  5. In hindsight, seemed to be trying to treat so many things in one acu session (loads of needles; I was a total pincushion) that I started wondering if some of the points used were actually cancelling out the effect of others.
  6. Wasn’t actually formally trained in acupuncture. [I know, I know, what was I thinking?!]

When I switched to another [competent] acu, the difference was just night and day on ALL the above points.

Acupuncture Qualifications and Credentials

The New Zealand Register of Acupuncture has a list of those acupuncturists who are members of the NZRA. If someone is NOT a member of NZRA or another relevant professional association, you should certainly raise an eyebrow. However, the fact that someone is a member of one of these NZ ‘registers’ is NO guarantee of quality. The acupuncturist I mentioned above, who had NO formal qualifications in acupuncture, was (and is) a long-time member of NZRA. Current requirements to join NZRA include a “qualification that meets the NZRA’s criteria” and some form of clinical assessment, but it would appear that several acupuncturists with no formal qualifications appear to have been “grandfathered” into the association early on and not subject to these requirements.

So, who IS a good acupuncturist?

For those of you looking for an acupuncturist, here’s a list of people who come highly recommended by fertility patients around the country (note that I can’t vouch that they really ARE brilliant since I’m not a Chinese medicine dr myself, but am just sharing what others have said). The following interpretation guide should help:

**Absolutely raved about ALL the time by patients (including those who’ve had success!) AND I’ve also heard endorsements from at least one credible expert source
*
At least one or two patients have spoken positively about them AND I’ve also heard endorsements from at least one credible expert source
[no asterisk]
Have been recommended by patients, but I haven’t also heard any expert endorsement about their competence, nor any concerns

Auckland

  • Dr. Vitalis, Mairangi, North Shore, 09 486 5111 **
  • Laura Bradburn, Acudoc, Auckland Central, 09 626 7120 (but she’s apparently on maternity leave in late 2009)
  • Lisa Houghton, Acudoc (above) and the Motherwell Clinic, Mt Eden, 09-630-0067
  • Bessie Lu, Village Acupuncture, Mt Eden, 09 630 3168

Hamilton

Napier

Wellington

Nelson

  • John Black, Nelson Chinese Medical Clinic, 22 Nile Street, Nelson 03 546 8733 *
  • Paddy McBride, Acupuncture Richmond, 40 Oxford Street, Richmond, Nelson 03 544 0411 *

Christchurch

  • Dr. Tracey Bourner (Ph.D. in research), Riverside Acupunture and Chinese herbs, Opawa, 03 981 1683 *
  • Georgia Bryant, Acupuncture for Health, South Brighton, 03 388 7346 *
  • Eleanor Marks in St Albans 03 960 9702
  • Suzy Tapper, Ferrymead Acupuncture, 03 384 8589

What should I ask a prospective acupuncturist before agreeing to work with them?

Whether or not a prospective acupuncturist is on the above list, it’s always a good idea to ask them a few questions before you agree to work with them. Here’s a list of questions to help get you started:

Where did you train? What acupuncture or Chinese Medicine qualifications do you have? Have you done any advanced training or courses since then? Are you a member of the New Zealand Register of Acupuncturists or some other professional association? [The ‘gold standard’ would be a bachelor’s degree in acupuncture from a reputable school in China or elsewhere PLUS some advanced training (master’s degree or other), preferably specifically in acupuncture and Chinese medicine for fertility PLUS some sort of certification that actually evaluates competence. Note that being “registered in New Zealand” simply means being a paid member of a professional association and is no guarantee of competence.]
[Assuming this is at a first/introductory appointment:] What is my Chinese Medicine diagnosis? Please explain (in lay terms) what it means and what your treatment approach would be. [Just my view, but if someone can’t explain what they are doing in understandable terms, that’s a good indicator they don’t REALLY have a good understanding of it themselves.]
How would my treatment differ before vs. after ovulation in my cycle? [Wrong answer: It wouldn’t. A good answer might include explanations like: The follicular (pre-O) phase usually emphasises kidney yin treatment, whereas in the luteal (post-O) phase we typically treat kidney yang. Also, points used after O should be those that would support a pregnancy; some of the ones used before O are good for that phase of the cycle but not safe if you might be pregnant.]
How would my treatment differ during an IVF/IUI cycle vs. during a natural cycle? [Wrong answer: It wouldn’t. A good answer would show some thoughtful logic such as: You’d generally tend to use less aggressive acupuncture treatment while someone’s on stims – you don’t want to make their ovaries blow a gasket!]
What successes have you had with women/couples of a similar age and with a similar Western diagnosis to mine/ours? Please describe one or two recent success cases. [Obviously, more success cases similar to yours are better. But keep your ears tuned too for evidence of the kind of systematic detective work a good practitioner would use to ‘listen’ to how the body responds and tweak the treatment. A fertility-challenged body is like a squeaky old violin that needs to be worked with carefully to make it sing the sweetest tune it possibly can.]
What professional associations are you a member of? Which Chinese Medicine-related conferences and seminars do you regularly attend? How else do you keep up with new developments? [You want to make sure you are working with someone who understands Chinese Medicine as not just an ancient tradition that you get trained for once and that’s it, but as a growing discipline that creates new knowledge all the time. If your acupuncturist isn’t making an effort to keep up with the field, that’s not a good sign.]
What would you say are the two or three most important advances in Chinese Medicine for the treatment of infertility in the past few years. Do you have a copy of a good recent article I could look at? [If your prospective acupuncturist can’t rattle off a few really interesting recent developments that are relevant to your case, that’s a sure sign he/she isn’t keeping up with the play. And beware of someone who doesn’t want to give you an article “because you probably won’t understand it” – first, they may not actually have any relevant articles because they don’t keep up with the field, and second, that’s a hint that they don’t see you as an intelligent and active partner in your own treatment.]

If the choice is not clear cut after asking the above questions, I’d suggest doing a session or two with each possibility and seeing which one seems like a better fit for you. Even the raved about acupuncturists on the list above have some patients who just don’t ‘click’ with their style. So, make sure the person you choose feels right for you.

· Where did you train? What acupuncture or Chinese Medicine qualifications do you have? Have you done any advanced training or courses since then? Are you a New Zealand registered acupuncturist?

[see Qualifications and Credentials, above for how to evaluate answers.]

· [Assuming this is at a first/introductory appointment:] What is my Chinese Medicine diagnosis? Please explain (in lay terms) what it means and what your treatment approach would be.

[Just my view, but if someone can’t explain what they are doing in understandable terms, that’s a good indicator they don’t REALLY have a good understanding of it themselves.]

· How would my treatment differ before vs. after ovulation in my cycle?

[Wrong answer: It wouldn’t. Correct answers would include: The follicular (pre-O) phase usually emphasises kidney yin treatment, whereas in the luteal (post-O) phase we typically treat kidney yang. Also, points used after O should be those that would support a pregnancy; some of the ones used before O are good for that phase of the cycle but not safe if you might be pregnant.]

· How would my treatment differ during an IVF/IUI cycle vs. during a natural cycle?

[Wrong answer: It wouldn’t. Correct answer: You’d generally tend to use less aggressive acupuncture treatment while someone’s on stims – you don’t want to make your ovaries blow a gasket!]

· What successes have you had with women/couples of a similar age and with a similar Western diagnosis to mine/ours? Please describe one or two recent success cases.

[Obviously, more success cases similar to yours are better. But keep your ears tuned too for evidence of the kind of systematic detective work a good practitioner would use to ‘listen’ to how the body responds and tweak the treatment. A fertility-challenged body is like a squeaky old violin that needs to be worked with carefully to make it sing the sweetest tune it possibly can.]

· What professional associations are you a member of? Which Chinese Medicine-related conferences and seminars do you regularly attend? How else do you keep up with new developments?

[You want to make sure you are working with someone who understands Chinese Medicine as not just an ancient tradition that you get trained for once and that’s it, but as a growing discipline that creates new knowledge all the time. If your acupuncturist isn’t making an effort to keep up with the field, that’s not a good sign.]

· What would you say are the two or three most important advances in Chinese Medicine for the treatment of infertility in the past few years. Do you have a copy of a good recent article I could look at?

[If your prospective acupuncturist can’t rattle off a few really interesting recent developments, that’s a sure sign he/she isn’t keeping up with the play. And beware of someone who doesn’t want to give you an article “because you probably won’t understand it” – first, they may not actually have any relevant articles because they don’t keep up with the field, and second, that’s a hint that they don’t see you as an intelligent and active partner in your own treatment.]

Questions to ask a prospective specialist

Tuesday, September 22nd, 2009

Before committing to working with a particular specialist, it’s a good idea to ask them a few questions to get a feel for their approach to treating patients like you.

All too often I have talked with women/couples who have gone through their first consult with a specialist and simply assumed that whatever treatment plan they are prescribed is somehow the “right answer,” that there’s nothing to question or compare. In reality, specialists do vary quite substantially in how they approach the treatment of couples with a particular diagnosis – even specialists working in the same clinic. You need to use your first consultation to get a sense of whether the specialist’s approach makes sense and feels right for you.

The following questions might help get the conversation started:

  1. What kinds of protocols do you use for couples of our age and with our diagnosis; which would you try first and why, and what would you suggest next if we didn’t do well on that?
  2. What successes have you had with cases like ours in recent years? Please describe a couple of recent cases you can recall.
  3. What is the most innovative or non-standard protocol you have used with a couple of a similar age and diagnosis to us? [You want to get a sense of whether they use a one-size-fits-all approach or whether they are prepared to think outside the box.]
  4. What is the minimum number of follicles you require in order to proceed with egg collection? Is there a minimum E2 (estrogen level) too? To what extent will we be consulted about whether to proceed with egg collection if numbers of follicles or E2 levels are lower than the norm? [You don’t want a dr/clinic that just makes unilateral decisions and dishes out instructions without discussion.]
  5. Under what other conditions would you cancel a cycle on us?
  6. What would you see as the main risks/difficult hurdles for a couple like us as we go through an IVF cycle?
  7. How many [IVF, IUI] cycles would you let us try if we (a) have been cancelled for various reasons (e.g. poor response) and/or (b) still haven’t attained a pregnancy after several tries?
  8. What other clinics or specialists in New Zealand do you know of who have experience with cases like ours? Is there anyone else you would suggest we speak with before deciding where to cycle?
  9. What is the cost of a cycle? Will we be eligible for public funding? If so, when? How long is the waiting list once we become eligible? Is there anything we can do to speed up our eligibility or waiting time, such as further diagnostic testing?
  10. Who does the ultrasound monitoring at this clinic? Who does the egg collection and embryo transfer procedures? Will I get my own specialist for these procedures? What if my egg collection or embryo transfer days fall on the weekends?
  11. If we have questions or problems (including when the clinic is closed), who will we call? [The reason to ask this is that at some clinics, you will never get to speak to a dr on the phone. The questions are often fielded by nurses (or answerphones!!) who will sometimes – but not always – ask the dr. But at some clinics, you are given your specialist’s cell phone number in case something urgent comes up after hours or when you can’t get through to a nurse who can answer your question promptly.]
  12. Do you believe that immune issues play a role in IVF success, and do you test for them in advance? If not, when would you test for such things? After how many failed cycles? How do you treat immune issues if and when they are diagnosed?
  13. [For high FSH/low AMH/poor responder gals …] Are you open to high, medium and low stim protocols for cases like ours, or will you insist that we do (say) medium stims every cycle?
  14. [Also for high FSH/low AMH/poor responder gals …] Is there a maximum FSH cutoff in order to be able to start a cycle? If so, how high is it, and can I take suppression beforehand to bring FSH down below the cutoff?

Before going into your first consultation, it is well worth learning as much as you can about the basics of IVF and the main protocols. The first consult always rushes past in a blur, but it helps a lot if you have just a little knowledge to get you started and a good list of questions to make sure you find out what you need to know.

If you’re nervous about the first consult, consider taking a support person with you, e.g. someone who’s been through the process before, or someone who knows a bit about it.

If you’d like some time to process the consult and think about the answers, and/or speak with another specialist to allow a comparison, don’t fee pressured to commit on the spot to starting a cycle. Tell the specialist you’d like a few days to chew it all over and will contact them or their nurse to let them know what you decide.