DeeNYC...question about Dr. Toledo

DeeNYC...question about Dr. Toledo

Violet
Violet

August 15th, 2012, 4:21 pm #1

Hi Dee,
How are you doing? I have been thinking of you.

Are you going back down to Atlanta in the near future? I hope you are doing okay.

One ? for you. I read that one of the reasons you saw Dr. Toledo instead of Shapiro is for your immune issues/recurrent losses. Do you feel he addressed those situations and if he did, what did he advise? My friend who saw Shapiro took Lovenox for recurrent losses as well as low dose asprin.

My DH and I are starting to look at next steps as I think this FET did not work. Ugh.

Thanks,
Violet
OT - To get my mind off of things, I have been watching NYC and NJ Housewives on my DVR. I can't get enough of their craziness!
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DeeinNYC
DeeinNYC

August 15th, 2012, 6:12 pm #2

Hi,

First of all, I hope you are wrong and your current FET works!! FX!!

As for Dr. To.ledo, yes, I did wait for him because I heard that he was well versed in immune issues. I had to wait two and half months for an appt. However, a week after my consult, I found out that RBA instituted a new policy whereby the use of intralipids will void the guarantee of two high quality embryos. That pretty much took away the reasoning for seeing To.ledo for me. Just a week earlier Dr. To.ledo had given me a protocol that included intralipids, prednisone, Lovenox and baby aspirin which I was very happy with. So yes, I feel he addressed these issues but was/is being hampered by the policies of the clinic. He is not as well versed in these issues as my Dr at SIRM but he also does not poo-poo or discount them like other Dr.'s.

I don't think Sh.apiro for instance is a fan of immune treatments and likely will not give you Lovenox as a prophylatic measure for immune issues but will likely give it to you for clotting issues. I am compound heterozygous for MTHFR so I'm not sure if that is why To.ledo agreed to give me Lovenox. That being said, if I had to do it over again, knowing what I know now, I would likely just see Sh.apiro. You have to know however that I was not happy at all about my transfer with Dr. To.ledo so this is one of the main reasons I feel this way and I am biased right now and not ok with what took place. On the other hand, Dr. To.ledo is a sweetheart. Really and truly. He also has a great staff. I have not heard as many nice things about Sh.apiro and his staff. In fact, I have heard some not so nice things. Still and all, Sh.apirohe could be an evil gremlin for all I care...just get me pregnant!! LOL AFM..not sure when I will go back. Likely later in the year.

As for teh HW's...I have been faithfully watching the NY HW's!! Love the new additions..except...HEATHER!! URGH!! BTW..did you see that Luanne might use donor eggs? It will be interesting to see how that plays out. I stopped watching the NJ ladies..just TOO much drama for me!!! LOL
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Violet
Violet

August 15th, 2012, 10:12 pm #3

First...the HW of NJ...I agree, they are nuts. I have to admit that they are too much for me at times as well. I do love NY...my new favorite is Carole and Ramona adds much entertainment value however I would not want to cross her...that is for sure! When the going gets rough with ttc, I am thankful for reality tv.

Have you been able to enjoy the rest of the summer at all?

So, there is much to think about with RBA. I am not loving this new use of intralipids=void of embryo guarantee. This does not make any sense to me. I had to actually read it to my friend who went there to have her DD and is going back. She said that does not make sense but alas...I trust you. What was their reasoning? Do you think that they are just overall against intralipids and fear it will get in the way of success with HIP embryos? How would they even know if you were taking intralipids?

Let me think about the Dr. thing. We actually did a phone consult with Dr. Shapiro about 1 1/2 yrs ago and decided to stay local due to insurance coverage. I thought he was nice enough however I did not know about my immune issues at the time and thought that Toledo was more well-versed/accepting of them and would treat them. My friend who used Shapiro did do Lovenox and baby aspirin as well as a high dose of Folgard for recurrent loses.

Also, my other concern is the new affiliates taking all the eggs. What is going on with this? So, they have affiliates who are using their eggs at their own clinics? How does that work? I am concerned that I would need a specific coloring in my donor and that it would not be available.

Any thoughts on this and how it affected you?

Lastly...sorry this is so long! So, the cycle did not work out. I will post something...I do have a question I have been wondering about. I have noticed that with my fresh and FET from DE, I have felt much nausea and night sweats. I did not have this with OE. Could this be an immune reaction such as my NK cells spiking or I also wonder if it's an aversion to the donor assisted embryo. Any thoughts? I am going to ask Dr. B about this when I hear back from him.

Thanks, Dee. I appreciate it.
Violet
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DeeinNYC
DeeinNYC

August 16th, 2012, 2:10 am #4

Violet,

So sorry that they cycle did not work out. As for the intralipids, I have no idea why the new policy. What was said to me made no sense. Another woman was told that some study showed that the use of intralipids decreased success rates. I asked around and no one seems to have heard about this. Someone pointed out that SOME inflammation is needed for implantation and that if women are taking intralipids without having any immune issues this could be a problem. Not sure how much I buy this especially since IVIG does not seem to be banned nor the use of steroids such as dex or prednisone..all of which help to lower an immune response. In my case and I'm sure many others, I have a documented immune issue. It just seems ridiculous to me to ban soybeans and egg yolk!! Bottom line..keep it to yourself if you intend to use intralipids. BTW..they also prescribed Folgard to me.

As far as the new affiliates, I don't think they had really taken off when I selected my donor which was only two months ago but I have seen a few people as of late complain about their 1st picks being taken. I also noticed that my donor's eggs were snatched up like within a week when she donated a new batch soon after I made my selection. Someone did say that they were told that the affiliates now have access to the bank so my guess is that there is a bit more competition. They will hold your selections for two business days however. I will also say that a lot more have come into the bank recently. I think they get a lot of donations in the summer during the summer school break. I have to say that I was VERY happy with the donor selection at RBA. You can look now at generic information about the donors so you might want to see how many as of now have your coloring..at least on paper.

Lastly, I have no idea about the night sweats or nausea being an immune response. I would definitely ask Dr. B and perhaps the ladies on the Yahoo board. You should check out the RBA thread on the Fertile Thoughts website's Donor Egg board. Lots of information and lots of success stories.

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HappyBean
HappyBean

August 16th, 2012, 9:01 pm #5

I can't really cycle until January 2013, so having to wait until October to do my phone consult with him doesn't seem so bad. Thanks for being so transparent with your info and experiences in your journey, Dee. You're helping a bunch of us, and I, for one, deeply appreciate it.
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violet
violet

August 16th, 2012, 10:27 pm #6

Violet,

So sorry that they cycle did not work out. As for the intralipids, I have no idea why the new policy. What was said to me made no sense. Another woman was told that some study showed that the use of intralipids decreased success rates. I asked around and no one seems to have heard about this. Someone pointed out that SOME inflammation is needed for implantation and that if women are taking intralipids without having any immune issues this could be a problem. Not sure how much I buy this especially since IVIG does not seem to be banned nor the use of steroids such as dex or prednisone..all of which help to lower an immune response. In my case and I'm sure many others, I have a documented immune issue. It just seems ridiculous to me to ban soybeans and egg yolk!! Bottom line..keep it to yourself if you intend to use intralipids. BTW..they also prescribed Folgard to me.

As far as the new affiliates, I don't think they had really taken off when I selected my donor which was only two months ago but I have seen a few people as of late complain about their 1st picks being taken. I also noticed that my donor's eggs were snatched up like within a week when she donated a new batch soon after I made my selection. Someone did say that they were told that the affiliates now have access to the bank so my guess is that there is a bit more competition. They will hold your selections for two business days however. I will also say that a lot more have come into the bank recently. I think they get a lot of donations in the summer during the summer school break. I have to say that I was VERY happy with the donor selection at RBA. You can look now at generic information about the donors so you might want to see how many as of now have your coloring..at least on paper.

Lastly, I have no idea about the night sweats or nausea being an immune response. I would definitely ask Dr. B and perhaps the ladies on the Yahoo board. You should check out the RBA thread on the Fertile Thoughts website's Donor Egg board. Lots of information and lots of success stories.
Hi there,
Thanks for your sweet words. I am pretty sad it did not work. I feel like we did everything...scratch biopsy, immune testing and treatment, lots of rest, acu, etc. Nothing.

I talked to my RE and Dr. B by e-mail. My RE thought the embryos were very good quality and we went through their rating on each day so not so sure there. He wants to try one more thing with me before we go to our last 2 embies. He wants to do an endometrium receptivity test. So, I do a full mock...all meds and then they test my endometrium on I believe, the 8th day after the surge. I was looking forward to a drug free month so I am going to think about it. I feel like why not as it will give me more info. Of course I wonder, why didn't we friggin do this already? My RE does not think I need to go all the way with doing the intralipds and neupogen with it however I think why wouldn't I if that is what I would be using in a FET.

I touched base w/ Dr. B by e-mail and told him about the testing. He does not normally do this one so he did not want to say yes or no. I did ask him about nausea and he said that it could be an immune reaction but he could not say definitively. Ugh.

So, I am going to book with Toledo as I have some time. I called RBA and waiting to hear back from them as I had already had a consult with Shapiro and so there is some red tape. It is good to hear they are getting more donors. I would just hate to put my hopes on them and then they don't have anything close to what I need, you know? That would be stressful.

You have been checking their database...just the simple listing they have with basic eye/hair/height, right? you don't still have access to the full database, right? My friend had such quick access it was crazy.

You have been great to share all this info with us. It has made everything that much easier. Both of my friends were there 1 yr ago so the information has changed!

Thanks, Dee. I hope you have a good night.
Violet
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DeeinNYC
DeeinNYC

August 17th, 2012, 4:09 pm #7

I can't really cycle until January 2013, so having to wait until October to do my phone consult with him doesn't seem so bad. Thanks for being so transparent with your info and experiences in your journey, Dee. You're helping a bunch of us, and I, for one, deeply appreciate it.
Hi,

I just want to be clear that Dr. Sha.piro is a GREAT Dr. and the head of the clinic. In fact, I count more successes from him than Dr. T.oledo on the other board I mentioned. I just don't think he's as immune issue friendly as Dr. To.ledo and I've heard that his staff is not the best in terms of communication. All of this is second-hand information. I also wanted to say that 2 of the last 3 postives on the same board mentioned have been with a Dr. named Mitc.hell-Le.af. She may be someone for people to consider if they can't or do not want to wait for Toledo. Good luck to you on your cycle.
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DeeinNYC
DeeinNYC

August 17th, 2012, 4:21 pm #8

Hi there,
Thanks for your sweet words. I am pretty sad it did not work. I feel like we did everything...scratch biopsy, immune testing and treatment, lots of rest, acu, etc. Nothing.

I talked to my RE and Dr. B by e-mail. My RE thought the embryos were very good quality and we went through their rating on each day so not so sure there. He wants to try one more thing with me before we go to our last 2 embies. He wants to do an endometrium receptivity test. So, I do a full mock...all meds and then they test my endometrium on I believe, the 8th day after the surge. I was looking forward to a drug free month so I am going to think about it. I feel like why not as it will give me more info. Of course I wonder, why didn't we friggin do this already? My RE does not think I need to go all the way with doing the intralipds and neupogen with it however I think why wouldn't I if that is what I would be using in a FET.

I touched base w/ Dr. B by e-mail and told him about the testing. He does not normally do this one so he did not want to say yes or no. I did ask him about nausea and he said that it could be an immune reaction but he could not say definitively. Ugh.

So, I am going to book with Toledo as I have some time. I called RBA and waiting to hear back from them as I had already had a consult with Shapiro and so there is some red tape. It is good to hear they are getting more donors. I would just hate to put my hopes on them and then they don't have anything close to what I need, you know? That would be stressful.

You have been checking their database...just the simple listing they have with basic eye/hair/height, right? you don't still have access to the full database, right? My friend had such quick access it was crazy.

You have been great to share all this info with us. It has made everything that much easier. Both of my friends were there 1 yr ago so the information has changed!

Thanks, Dee. I hope you have a good night.
Violet
Hi Violet,

It's soooo frustrating when you do all that you can and all that you've been told to do and still come up short. With respect to the scratch biopsy, I had one this past cycle for the very first time and this is the first time in the last 4 transfers that I did not have implantation. I will not do it next time. Interestingly enough, after I had this done, someone posted on another board that scratch biopsies are not good for those of us with immune issues because it causes an immune response. I don't know what to believe as I had an hysterocopy/D & C the cycle before my prior transfer and had implanatation and that certainly scrtached the endometrium!! It's all too much sometimes. Damed if you do...damned if you don't!! URGH!!

As for RBA, if they will not let you see To.ledo, in all honesty, you will be in very good hands with Sha.piro. I can only see generic information on their database. They removed my access one day after I confirmed my pick!! LOL QUICK is an understatment. Once you gain access, you should copy all photographs of any prospective donor as well as print all reports because you may lose access quickly. Some people have access much longer. I just think it depends upon how diligent the coordinator is in removing your access.

If you want to know more about the edometrium receptivity test, you should ask some CCRM ladies. CCRM makes many of them do this test. Check out the CCRM thread on the IVF board at www.fertilitycommunity.com.

Anyway, good luck and keep me posted.
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Violet
Violet

August 19th, 2012, 1:16 pm #9

You are wonderful. Thank you.
That is interesting about the scratch. This was my first cycle to try it and nothing. At least during the fresh, I had a chemical. Geez.

So, we read through the paperwork about the receptivity testing and we are going to do it. BIVF is using a company in Spain that does it for them. So, it's called Endometrial Receptivity Analysis. Waiting on AF to get started. Not dying to do this however DH and I think that we would rather do it now with our local clinic than have to do it later if we decided to move on to RBA or CCRM. Thanks for the info about CCRM on Fertility Community. That is helpful as I can see what others are doing.

I spoke to a nurse at RBA and explained my immune issues and she talked to Dr. S and he said he would be happy to continue working with me (We already had a consult with him awhile ago). So, I'll get that booked tomorrow and get some more information about their guarantee program.

We have our follow-up with Dr. B in 2 weeks in NY.

God, I am tired of all of this running around and trying to figure it all out. I just want my baby and get on with my life! How about you?
Thanks for being you...
Violet
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DeeinNYC
DeeinNYC

August 19th, 2012, 4:32 pm #10

Glad that Sh.apiro will work with you and your immune issues. I think it's a good idea to have the receptivity test...at this point..why not get all of your bases covered. It sounds to me that you have a great plan in place. With Dr. B and either CCRM or RBA, you are in good hands. I soooo understand how you feel about just wanting to get on with your life. I say it all the time..I just want my life back!! URGH!!

Anyway, Good luck and keep us posted.
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