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Meeting with RE tomorrow for RPL


Forum: Trying to Conceive with Medical Assistance

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  • 1 Post By *JenJen*
  • 1 Post By JulieMc

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  #1  
April 16th, 2012, 10:13 AM
JulieMc's Avatar Loving my babies. :)
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Hi. My name is Julie. I usually hang out these days on the TTCAL board. I have 2 children, born July 2009 and November 2010. I had pre-eclampsia in the 1st pregnancy and the second was pretty normal. Since then, I have experienced recurrent pregnancy loss. Aug. 2011 was a chemical, Sept. 2011 was a 5 week loss, and February 2012 was a 11 week loss. I think I may have also just experienced another chemical this cycle (got numerous faint BFPs, then stopped getting them and am now 2 days late for AF with BFNs). So that would be me at 4 consecutive losses, which is not that common. Something is clearly going wrong.

Tomorrow I am seeing a reproductive endocrinologist. I usually see a midwife for my pregnancies, but after the February loss I had her do the recurrent loss bloodwork and had her get testing done on the fetal tissue. My blood work came back that I have the PAI-1 4g/4g genetic mutation, and the compoud heterozygous MTHFR mutation (C677T and A1298C). The fetal testing came back that it was a normal male with no chromosomal abnormalities. That m/c was particularly odd in that the fetus had proper growth and had a heartbeat at the time I miscarried. It was rather sudden, and I hemorrhaged hours after bleeding started and only 2 hours after I'd had an ultrasound that showed a baby with a good, strong heartbeat.

After the results of my testing came back, my midwife referred me to see a high risk OB for genetic counseling and to come up with a plan of action for future pregnancies. I have no problem getting pregnant and do so pretty easily, but it seems I have acquired a problem in holding on to them. I met with the high risk OB, and it was the most awful appointment of my life....he ridiculed me for not using birth control (against my beliefs and not something I'm interested in), and basically blamed my losses on breastfeeding (my 17-month old still BFs about 3 or 4 times a day). He told me not to get pregnant until I've stopped BFing and that I should use birth control. He didn't explain the genetic issues at all, despite me asking him to. He was really mean, and 2 days later I had an appointment with my midwife...we discussed that appointment and she was appalled at how I was treated and what he told me. She told me she would be complaining to his boss, and she was going to try to do a phone consult with another doctor so I could get answers and not have to pay for another appointment.

Last week, I got a call from the head of OB for the entire huge system of hospitals that I use. He is also the head of reproductive endocrinology. He apologized profusely for my bad appointment with the other guy, and said that he would like to meet with me for a free of charge appointment. He said he would go over all of my records, and he would explain the genetic issues. He mentioned something about possibly ovulation quality issues, but said he'd read over my files and we'd discuss more at the appt and that he'd likely have to run more tests.

So, that's my background.

My appointment with the RE is tomorrow. I am very anxious and hopeful that he can help me find answers as to why I keep having losses, and what we can do to prevent them in future pregnancies. I am not content to sit back and just hope and pray for the best.... I want to make sure I and my medical people do everything possible to make sure I can get pregnant and stay pregnant.

As you guys are the TTC with medical assistance board, I am assuming you have a lot of experience in dealing with REs and high risk doctors and some of these issues. So I'd like your advice for my appt. tomorrow.


- What kind of questions should I ask?
- Is there any testing that I should push for?
- Any other recommendations, advice or comments?

Depending on what I find out tomorrow, I may be joining you guys. While we are waiting for answers and a plan, my midwife put me on Folbic (b6, b12, folic acid), and I put myself on low dose aspirin...she said neither can hurt and could only help.

Thanks in advance for any info you can share with me
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  #2  
April 16th, 2012, 10:43 AM
*JenJen*'s Avatar impatiently waiting
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I am so sorry for your losses. It sounds liek you have a found a good doctor, and I hope he can get you some answers and your sticky BFP.

In regards to your questions:
- What kind of questions should I ask?
What are their office hours?
Why does he recommend a specific treatment?
What is protocol for a standard cycle?
What is their policy on ovulation induction cycles? (I.e. monitoring, unmonitored, how many, etc)
What is their monitoring policy for early pregnancy? At what point do they release you to an OB/MW?

- Is there any testing that I should push for?
I'd make sure you do a complete day 3 workup(AMH, FSH, e2, LH, TSH, etc) and maybe even an HSG in case its a tubal issue causing the chemical pregnancies

- Any other recommendations, advice or comments?
Take notes-lots of notes. Don't be afraid to ask if you can record the meeting on a tape recorder or via cell phone if you are worried you won't remember it all.
If you are going to be self pay, don't hesitate to ask for a price list for procedures. It can give you an idea as to what the costs are and what you will be dealing with in the months to come.

Good luck!
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My Blog
Me: 27, PCOS, ENDO, RPL, severe vitamin D defficiency
Him: 36, severe MFI post VR but counts climbing

2006-2015 7+ years of NTNP, TTC, TTCMA, Losses, Surgeries, and Diagnoses.
RPL and Genetic Tests came back 100% normal | Endo, PCOS, severe MFI
Multiple early losses between 3 and 8 weeks.

IVF referral in= 7/2017
RE Appt #1- 8/22/2017- doctor swears I don't have PCOS or RPL, go VEGAN to cure all
RE Appt #2- 8/24/2017- sono shows clear cysts, high afc, all bloodwork comes back PCOS typical

PAUSED UNTIL JANUARY 2018 to find a new IVF clinic







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  #3  
April 16th, 2012, 02:07 PM
amandakay29's Avatar Mega Super Mommy
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I don't have a lot of time to respond but your story sounds a lot like mine. I'm so sorry for your losses. I also have MTHFR double mutation! I'll respond better in a little while. Cooking dinner
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  #4  
April 16th, 2012, 05:31 PM
JulieMc's Avatar Loving my babies. :)
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Quote:
Originally Posted by amandakay29 View Post
I don't have a lot of time to respond but your story sounds a lot like mine. I'm so sorry for your losses. I also have MTHFR double mutation! I'll respond better in a little while. Cooking dinner

Thanks. I look forward to your insight.
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  #5  
April 17th, 2012, 06:30 AM
amandakay29's Avatar Mega Super Mommy
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Sorry it has taken me so long to respond. I'm so sorry you had to deal with the mean RE. I know nothing of breastfeeding and pregnancy other than others have done it successfully.

I would ask about your progesterone level after ovulation. I would ask if they do Lovenox after pregnancy is confirmed for the clotting disorders. All the questions above are perfect. I'm wondering if they wanted you to do birth control or stop breastfeeding because the meds you would have to go on would be bad in breastmilk? I definitely think they should have explained it further instead of just saying stop.

I really do not have much insight. We have to get pregnant to find out if the Folgard and lovenox will work and we seem not to be able to do that all of a sudden. It seems everything is breaking on me. If you have any questions about anything please in box me.
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  #6  
April 19th, 2012, 09:02 PM
elle8's Avatar Super Mommy
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Location: Dallas
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Hi Julie,

I think you should really do some research into the reproductive immunoligy issues that can cause RPL. I have not had any losses but I cant seem to get pregnant even when everything looks great and after a perfect IVF cycle. I have really started looking into RI and there is a ton of more in depth testing they can do to discover some issues that could cause RPL or repeated implantation failure. A big thing they will do is an NK cell assay test. Not many RE believe in this or will order the tests but there are Dr's making tons of progess on this front with steroids, intralipids, antibiotics and other treatments. It is a lot to take in but if you want some more information let me know and I can direct you to the right places. A really good place to start is a book by Dr. Beer called, "Is Your Body Baby Friendly". I also learned a ton of information through the forum at FF. Good luck and I hope some of this helps.
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  #7  
April 20th, 2012, 04:18 AM
swtneka's Avatar Praying for a miracle
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I don't have any insight as I wish I'd asked these questions when I went to c my RE but wanted to wish u luck n hope u get some answers.
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  #8  
April 20th, 2012, 04:30 AM
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I've never seen an RE so had no clue on that. How did the appointment go?
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  #9  
April 22nd, 2012, 02:31 PM
JulieMc's Avatar Loving my babies. :)
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The appointment went very, very well. I am very pleased that I will be seeing the RE now. He is super nice, and seems very knowledgable and willing to get to the bottom of these issues I have going on.

I'll try to sum it all up pretty quickly. (If you want the long version, scan the TTCAL board, I have a huge write up there.)

He took all of my history (past pregnancies, cycle, family history, etc.), and then he looked over my records and all of the blood tests that had been done so far, as well as the testing on the last miscarriage baby (was normal male). He seems to think it may be a hormonal thing, and it is very possible that I have another clotting disorder. He also mentioned possible ovulation quality issues (as a result of the hormones). As I said he looked over all of my labs, and the lupus anticoagulant one was marked "normal" by the lab, but he looked at the actual numbers and said it was "high" and definitely not normal...so he is having that redone. He said if it is in fact high and abnormal, I would take heparin during pregnancy. Apparently this issue causes clots to form, which can be bad... I go back this Thursday for another appointment. Last week he ordered a bunch more blood tests that hadn't been done yet, so we will go over those results. Hopefully they give us a good clue of what needs to be fixed. Then he is also going to do a saline ultrasound. He did a regular transvaginal ultrasound last week and said that he did not see any fibroids or anything, but I guess a saline ultrasound would show more? During the u/s following my most recent miscarriage, which was done to make sure that there was retained tissue, the tech noted an abnormal blood vessel on the uterine wall, but the OB said that it was not clear at that time what it meant. So, the RE is gonna check that out as well....

I am really hoping that by Thursday, we will have a clue as to what is going on and plan in place. Either way though...when I do get pregnant again, he said I will see him for the first 10 weeks, and then he will release me to my midwife with instructions on whatever meds I might need to take, etc.

The other cool thing is that he has two residents working with him....and they are super cool as well. So I've got three heads working on figuring out my problem instead of just one.
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  #10  
April 22nd, 2012, 02:48 PM
*JenJen*'s Avatar impatiently waiting
Join Date: Aug 2008
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Posts: 7,850
Sounds like it really went well and that you've got a good doctor! Hopefully very soon there will be a plan in place to get you your sticky BFP!
__________________

My Blog
Me: 27, PCOS, ENDO, RPL, severe vitamin D defficiency
Him: 36, severe MFI post VR but counts climbing

2006-2015 7+ years of NTNP, TTC, TTCMA, Losses, Surgeries, and Diagnoses.
RPL and Genetic Tests came back 100% normal | Endo, PCOS, severe MFI
Multiple early losses between 3 and 8 weeks.

IVF referral in= 7/2017
RE Appt #1- 8/22/2017- doctor swears I don't have PCOS or RPL, go VEGAN to cure all
RE Appt #2- 8/24/2017- sono shows clear cysts, high afc, all bloodwork comes back PCOS typical

PAUSED UNTIL JANUARY 2018 to find a new IVF clinic







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  #11  
April 22nd, 2012, 02:50 PM
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It sounds like you're in very good hands. The saline u/s will give them a much better picture of what's going on than a standard u/s. Think of it sort of as standard vs. high def. It's a good test to run just to be sure when you're already going through so much else. I hope you get some good results rolling in soon.
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  #12  
April 22nd, 2012, 04:45 PM
JulieMc's Avatar Loving my babies. :)
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Is a saline ultrasound uncomfortable? I'm kind of nervous about it.
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  #13  
April 23rd, 2012, 04:45 AM
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I've never had one done, but it may be in our future. My understanding is that it can cause some cramping and taking ibuprofen an hour or so in advance can really help. It's not as uncomfortable as the same test, but with dye in place of saline.
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  #14  
April 23rd, 2012, 06:55 AM
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Wow, sounds like you have a great team working on this for you! I hope that you get those answers soon so you can get that sticky BFP!
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  #15  
April 25th, 2012, 08:29 PM
JulieMc's Avatar Loving my babies. :)
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Do you guys think that he will come up with some kind of plan for me tomorrow? It will be my second appointment with him. How long did it take your RE (or MFM or OB) to come up with something?

He's run every blood test possible now, getting all the ones that my midwife hadn't yet ordered, and he will have all the results to share with me tomorrow. And he's doing the saline ultrasound. Is it unreasonable of me to expect a plan of action to be formulated tomorrow?

I'm just hoping so much that even if nothing comes back to give us a clue of what the problem is, that he'll say "well, we're going to try xxx.."
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  #16  
April 25th, 2012, 10:03 PM
swtneka's Avatar Praying for a miracle
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I'm sure once they figure out what's going on they will share what's to come. I'm glad your appt was productive n I pray that u have a sticky bean soon.
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