Monday, 5 November 2012

CCRM Consult!



We were on a waiting list for an earlier appointment at CCRM.  And late last week we got the call for a last minute appointment, and we jumped on the opportunity.

I had read some things online about CCRM, and I follow a great blog where the author dealt with CCRM.  (http://lifeandloveinthepetridish.blogspot.ca).   My expectations were high for Dr. Schoolcraft after all of the great things that I had read.  And I am very pleased that he did not disappoint.

I wanted to post what I prepared ahead of time to ask, and how he responded. Warning - this is very long! 

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.
Already answered.

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.

Testing:

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


Lifestyle:
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.

Timeframes:
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! 

5 comments:

  1. Sorry for the terrible formatting.

    ReplyDelete
  2. This comment has been removed by the author.

    ReplyDelete
  3. Just found your blog. Thank you for posting all of this information! It gave me a lot to think about.

    ReplyDelete
    Replies
    1. I'm happy to hear that. If I help in another way, please let me know.

      Delete

I'm interested in what you have to say