1. How would
you summarize our case?
Someone suggested this as a good question to ask
because it would show if the doctor had reviewed our records, as well as
anything they had missed. This way we
could be confident in the advice we were given from him.
The Doctor however, started off the conversation by
asking us to summarize our case for him.
I liked this because it allowed me to get everything on the table. I also thought this was smart from his point
of view to see what we know and where our gaps of information were with our own
case.
2. Why do
you think our previous attempts were unsuccessful?
He said it was probably embryo quality, that people
with high FSH and sperm issues likely would make abnormal embryos. He recommended two things:
1.
IVF with own eggs and sperm – He said our last attempts didn’t “answer as
many questions as it created”. He was
impressed with how many eggs I made the last time (11, with 9 fertilized, 6
made it to transfer). He said to see all of the embryos not work
would make us think there is a problem with the uterus or the eggs. The biggest problem with the eggs would be a
chromosomal error. He suggested CCS
(comprehensive chromosomal screening) to see if embryo quality was the issue. He
wanted to take a very thorough look at my uterus, and well have us tested for
chromosomal errors with both of us. (Note – we have had this testing I believe
it is normal). He suggested transferring
just our normal embryos.
He said the only
downside of this option is money. Especially,
if we could afford 2 cycles. “We’ll get a baby or get an answer”. We would have closure and resolution to this
dilemma.
Later, he said
that we could do the one-day workup and use this information for either a donor
or own egg cycle. We can decide this
later on.
2.
Donor eggs – He recommended this option if we only had enough funds or
emotional energy to do one more cycle or attempt. He said he would be very positive about the
success of donor egg. But he said with
our miscarriage with the donor embryo he wouldn’t want to get tunnel vision, he
would want to make sure we weren’t overlooking something on the sperm or the
uterus.
3.
He said that he didn’t think I have an issue carrying. He said there was no evidence to support
thinking I have a problem. He said he
would like to do another HSG to see what my tubes and uterus looked like, as
well as blood flow to my uterus.
3. What do
you see as the biggest factor against us (ability to carry, eggs, sperm,
other)?
He said you would think the sperm would stand out
as the biggest factor to him. But it he
said it doesn’t because his chromosomes are normal and he has plenty of sperm
to do ICSI. With normal chromosomes, it
doesn’t usually impact IVF rates. The
FSH of 23.8 is the real outlier, and it occurred 3 years ago. When FSH is above 10, it is saying that my
brain, which makes FSH, is yelling and screaming at the eggs to get them to
grow. And usually that implies they are
not such good quality. That’s the most
off-the-radar result.
He said that some people with high FSH still make
reasonable numbers of eggs, but the quality is poor. Unfortunately the quality is at the level of
the chromosomes. So, we would be still
be clueless, because on day 5 we could have a beautiful blasts, and still have
no idea if it they have the right chromosomes.
He said that my high FSH is what led my first two
doctors to recommend donor egg. He said
that’s pretty dramatic. They were
responding to my eggs/FSH in this recommendation, not my uterus or the sperm.
It doesn’t mean
we can’t use my eggs or uterus, it means that what you are at risk for, nobody
has checked. We are at risk for producing
chromosomally abnormal embryos. And we
can’t know if that’s happening unless we test them. And if we test them then we
know a) all our embryos are abnormal, or b) We’ve got some normal. If we made another 6 or so embryos and had one
or two that were normal, we could just put in the ones that were normal, the
ones that have a chance to make a baby.
He said it’s an option to do IVF, but it’s a risky
option. Because with an FSH of 24, there’s
a pretty good chance that all of our embryos would be abnormal. We would have to be ready and willing to go
through an IVF cycle knowing that it may work or I may not have any embryos to
transfer. He said if we could do
multiple cycles going forward, you could argue, I’d give that a try, and it
fails, I could still turn around and try donor egg.
He said if we are at a point where we can only do one
more cycle, emotionally or physically, that we should statistically place that
bet on donor egg.
[Note: This was a differing opinion than our
current/soon to be previous doctor, Dr. M.
Dr. M said that new research was saying it could be a largely sperm
quality issue. He thought my eggs were good, and never mentioned this
correlation between FSH and egg quality. ]
Dr. S said that he would do a sperm assay to test
the sperm but that it was likely that the egg quality is the overriding issue.
4. One miscariage
was with donor embryos and one was with our own embryos. What do you suggest is the cause of our
miscarriages?
He said that the fact that some of our transfers were with donor embryos
definitely “muddies the waters”. He said
that we don’t have enough information to tell what the issue is. That if we chose IVF, we should do CCS to
give us more information. If all of our embies came back as abnormal
then we would have our answer about why our last IVF didn’t work.
5. Why do
you think we had morulas instead of blasts (4 of 6 of our own embryos)? Why do you think this happened?
He said it’s hard to say. That it could be the eggs
or the sperm or the lab. He said many
patients go to their clinic because they have a history of poor blast
development and when they go there, they have beautiful blasts. The lab can have a big influence on the
embryo growth. They can grow embryos to day 5 when others can’t.
[Note: Our current lab did grow the embies to day
5. Admittedly, I have no way of knowing
if they did it in the best way.]
What testing would you do on sperm quality? We know that count and motility aren’t that
relevant because we already have to do ICSI.
It’s really a quality issue. Am I
putting a sperm in an egg that could lead to a healthy embryo? He recommended two tests 1) a chromosome
analysis done on his blood. This would be done on me too. They would be looking for a translocation. 2) Sperm Chromatin Assay. This asks the question: so he does have all
of the 46 chromosomes in the sperm head.
Are they organized in an orderly fashion or are they starting to
fragment and break up? It’s either
called a sperm chromatin assay or DNA fragmentation assay. He said if the DNA are starting to fragment
or break up in the sperm head, it can cause embryo quality to be poor. He said that if both these tests came back
normal, then it would be “all about the egg”.
As a side note – he would also ask for an APA test
as well. This would make sure we didn’t
need a carrier.
6. Dr. M had
a theory that my eggs weren’t maturing properly in my natural cycle. What are your thoughts on this?
He said that this is likely happening. That people
who have high FSH commonly have this problem.
7. What do
you think about the antibiotic protocol we were previously on (two separate
times to treat a possible sub-clinical infection 500mg flagyl and doxycycline)?
He said they always administer a low dose
antibiotic before starting an IVF cycle.
That he didn’t believe in this high dose antibiotic treatment. 100 mg twice
a day for seven days of doxycycline.
He said multiple doses or heavy doses of
antibiotics is crazy.
Protocol Recommendations:
1) What are
your recommendations for us?
Didn’t ask because he answered right away.
2) Can you
be specific about protocols etc.?
He said he couldn’t. I asked if they would be dramatically different
than our current Doctor’s? He said no,
that he believed that the major difference was in the quality of the lab. He also said that they prefer to use estrogen
patches.
3) What do
you believe are the chances for us to make embryos, to get a positive test, to
have a live birth?
· He said that he
doesn’t know.
· That a normal couple
our age would get 15 eggs, 7 blasts, 4 would be normal.
· If we looked at that same
person with an FSH with 24, it would be much different. He said it’s bizarre and awesome that I made
11 eggs. If I made 11 eggs again, I
would be only looking at one normal blast.
Not one blast, but one normal. He
said he would be thrilled with that. One
normal blast in their center would give us 50% chance of a live birth.
· With one normal embryo
we would transfer it during a frozen cycle so we could have a fresh start with
my lining and hormones. He said that estrogen levels can be very high with a
fresh cycle and that can be a problem.
Also the CCS would require the embryos to be transferred on day 6, and
at this time the lining has already passed it’s optimal point.
o
What protocol would you use? He said he wouldn’t know until he saw my AMH,
follicle count etc.
o
Other considerations? Didn’t ask.
4) We have
someone who is willing to be a gestational carrier. What are our chances with a gestational
carrier?
He said he doesn’t see any of our problems as us
needing a carrier. He said a carrier
would be for a uterine problem or heart condition or something. He said I had one HSG where they claimed
everything was ok. He would want to see
me to verify this by doing an office hysteroscopy and three-dimensional
ultrasound. They would measure my
uterine blood flow.
5) Chances
with an egg donor?
He said it would be around 80% if we transferred two embryos, with one,
60%. They have the highest donor rates
in the world, that donor egg works really well.
6) What do
you think about the ZIFT method? Is it a suitable option?
He said that this was 20-year old technology. That it was invasive, it’s general aesthesia,
and it’s abdominal surgery. It doesn’t work as well as IVF, and you can’t do
genetic testing on the embryos. We would
be back to putting embryos in that we don’t know if they are genetically normal.
His words were to stay away from that
guy he’s stuck in the 80s.
7) How do
you treat MTHFR (heterozygous for A1298C mutation)?
He said that 40% of
the population has this. That it doesn’t
cause miscarriage. It can’t be important
because otherwise there would be more miscarriages in the general
population. I reminded him about my
sister having a stroke at age 28. He
said that he could run a series of blood tests related to clotting, if for
nothing else, but to help rule out future problems.
He said MTHFR is an
enzyme and it metabolizes something called homocyctine. If your homocyctine
levels are high it can cause blood clotting and lead to complications later in
pregnancy in the second and third trimester.
So it is worth checking the homocyctine levels, it’s a cheap and easy
test to do. This is to make sure my other normal gene is metabolizing the
homocystine levels properly. If the
levels are high, the treatment is just high does of folic acid, typically after
a month of high dose folic acid, you repeat the homocystine level, and it will
be normal.
The worst case you
would take some folic acid. It wouldn’t cause IVF to fail. It wouldn’t even cause a first trimester
loss.
Follow up question – regarding correlations and concerns because my sister
had a stroke. He said there are things
like Factor 2, Factor 5, Protein C, Protein S, Antithrombin 3, he said those
are things done on the thrombophilia/blood clotting panel. He said we could check this for me, if for nothing
else, to give me some peace of mind for my long-term health. He said he could make a list of these tests,
that I could get them in Canada, where it would be cheaper for me to get them.
a. What do
you think of the Lovenox, Prednizone and Asprin protocol which I was previously
on? He said he would not recommend it. He said it all
voodoo.
b. Do you
prescribe Folgard, why or why not? Only to people that have two copies of the mutation
or test positive for other clotting problems.
8) Do you
recommend acupuncture or any other treatments in addition to the prescribed
protocol?
He said that if blood flow to the uterus was a
problem for me (as determined in my one day work-up), then he would recommend
it as it can increase blood flow to the uterus. He said it wouldn’t hurt me.
Other Eastern medicine recommendations? He said
they have a list of supplements that they have that we could try. They will
give us the list when we come down for our work up.
9) Do you
recommend CCS (comprehensive chromosomal
screening) for us? Why or why not.
10) Do you recommend co-culture?
He said he recommends it to people that have very
few eggs, and their embryos can’t get to day 3, or didn’t get look well at day
3. He didn’t think we needed it.
11) What do you think about DHEA and CoQ10?
(Dosages)
He said he wouldn’t argue with that.
We did make 11 eggs, which was shocking for my FSH. There are no randomized trials that show DHEA
works, but there are some retrospective studies that show that it may
help. If that’s how you prepared for the
cycle that got you 11 eggs, do it again. He felt I should continue 75mg per
day.
He said he would
do that too. He said the only data is on
a mouse. But the mouse data looks pretty
exciting, it was out of Toronto. He said
the human equivalent of CoQ10 was 600mg.
1)
What other testing would you recommend and why?
This was answered through out our session. He said
the nurse would send the comprehensive list of tests.
2)
How could the results of this testing change the
protocol you would select?
Didn’t ask.
Answered throughout our meeting.
3)
Dr. M has recommended laproscopy and another
hysteroscopy. I could have this done in
Canada for free.
a. Do you
concur with this line of testing?
No. He was alarmed at this. He said that I do not need this. He
said that was really terrible advice. It’s
like having a knee surgery when you don’t have a problem. You can have one, but you don’t need it. He said there is nothing he could find with a
laproscopy that could change. He said
with your husband’s sperm you need IVF.
You’re not going to get pregnant with an IUI. And the only reason they do a laproscopy is
to help the tube pick up the egg to get pregnant.
He said he would like to repeat my HSG because the results suggest my left
tube could be blocked distally. He said
the language they used was kind of vague.
He said it’s ok if the tube is blocked right where it hooks on to the
uterus. But if the tube is blocked near
the ovary, then that tube can build up fluid and this fluid can back up into
the uterus. This can keep embryos from
succeeding. A distal tubal blockage
would mean that I would need something to be done to that tube. Either it would need to be ligated or removed
to keep the fluid from back washing into the uterus.
b. Would you
accept these results? n/a
What do
you recommend for lifestyle changes? Specifically in the areas of: caffeine,
dairy, alcohol (none?), hormones in meats and dairy, hot tubs.
Before procedure: 1-2
cups of caffeine maximum. Alcohol is ok
in moderation (2-3 drinks per week). He
had nothing to say about the hormones in dairy and meat, he felt it was fine to
eat. He said D should not go in the hot
tub at all. That his sperm count was so
low, that it could be make it go to zero.
During – no caffeine
is better, but one cup a day is ok if I couldn’t eliminate it.
How long would it be before we could start each of
these options?
We could do our one-day work up within 6 weeks. We could potentially be
doing IVF in January. That donor egg
could be longer depending on how long it takes us to select a donor.
Are all of your donors anonymous? Theirs are anonymous. We would see childhood photos and see
everything about them except their phone number and address and name. There are agencies in the USA that allow
known donors where you can sit down and interview them. He said it is truly our choice. They are happy to use either agency. The
nurse could provide the names of the agencies.
In terms of a satellite clinic, which would you
recommend? How important is the one you select?
He knows a clinic, RMA of Michigan.
He helped out, and they know them well. It’s a very reliable place to deal
with. He said IVF Michigan wouldn’t be
his favourite place. He said that other
place told us some funny stuff, that RMA has more competence.
What do you expect the satellite clinic to do? Not much just a few blood
tests, measure follicles and estrogens.
They send the data in and they interpret the data and call us at the end
of the night.
How long in Colorado? Come in on
day 7 of stim, and stay until egg retrieval.
So it would be about 5-6 days for me.
Dennis only needs to come on the day of the egg retrieval. I could go home right after the egg
retrieval. After the egg retrieval, they
would be growing the embryos, testing and freezing them.
He said frozen transfers always are better than fresh because of the
genetic testing takes time and the uterus only wants an embryo (really) on day
5. On day 6, it isn’t as receptive. Estrogen is 10x normal, the progesterone goes
up earlier than normal. Nothing is normal.
Several studies have shown that even without genetic testing, frozen
cycles are better.
More to come on what I think of all of this information!
