Posts Tagged ‘Diagnoses’

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!

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.