Folow up RE visit/whew! Need more advice

iVillage Member
Registered: 04-09-2004
Folow up RE visit/whew! Need more advice
6
Mon, 06-28-2004 - 11:32pm
Hi Everyone,

First of all I really want to thank everyone on this board for being so supportive and generous. I am amazed at the level of compassion out there! It is wonderful and has really helped me through a difficult time with this last miscarriage. I AM SO GRATEFUL TO HAVE FOUND YOU!!!!!! These boards are so helpful to so many...

So, I had a follow up visit with this RE I have started seeing. I have decided to stick with him for now since they take my insurance and though quite "dry" i find this Dr. Stein to be extremely on the ball. Everyone in the office is very efficient too.

In my follow up visit I also had a saline sonogram where my uterus was checked to see if I had any abnormalities or cysts or fibroids. It did hurt a little for about 3 minutes. They found everything to be normal with that which is good news.

Also all the tests came back normal. My FSH on day 3 is still low at 6.2 and my estradiol was 40. He also checked my ovaries and said that they are a good size which is also good news as that does indicate that I am producing eggs (which I knew, but he said that women approaching menopause will see their ovaries start to shrink because of dimininshing egg reserve)

All the autoimmune, blood clotting tests came back normal. He did Lupus Anticoagulant, prothrombin time, thyroid peroxidase AB, Thryogobulin AB, anti-nuclear AB, cardiolipin AB, Factor V (leiden).

However, I seem to remember reading in one of these posts that sometimes these tests can come back normal and there still may be a problem. Are there any other more specific tests that you guys know about that he didn't do on me? (man, i think they took about 12 vials of blood. I thought of you lisa42 with your 15 vials!!!) I know that I really want to see Dr. Beer, but I still don't have the funds yet (though I am saving up. maybe by the end of the summer) and I was wondering if anyone can tell me what other tests Dr. Beer would do. For example I know that Lisa (IVLISA41) was doing IVIG treatments(I think that is what it is called). Lisa: How was it determined that you needed that particular treatment? You and I seem to be similar in that we are both over 40 and have had multiple miscarriages so I truly appreciate hearing from you about all of this stuff. What I appreciate about you is that you approached this from many angles and have had success! (you are an inspiration!)

So, after going through all the results with me, Dr. Stein said that at this point he recommended injectables in the form of Repronex and Ovidrel(HCG). I would have to attend a class to learn all about it and how to administer the injections on myself. He said he would want to see how I would respond to these injections. If I respond well then he would go the next step which would either be IUI or IVF.

I NEED ADVICE! My head is spinning. I am one of these people who is really against anything that is not natural. yet at the same time I know that time is of the essence here and I really want to get pregnant at least by Sept-Dec. period. I was wondering if anyone knows of any studies done on the safety of taking these hormones? have there been any studies to show any increase in cancer etc.?

Also can anyone give me the low-down on all of this in a layperson's terms. If I do the injectables my understanding is that I could produce something like 5 eggs?. Could it be possible that I could have quintuplets or triplets? (I know that the likelihood is low, but could it still be a possibility?)

One thing that I found out is that this place I am going to has one of the highest rates of IVF success in the country, so that is good news. I just don't know how I feel about IVF.

By the way, IVLisa41, with your current pregnancy, could you share with me what your exact protocol was? These twins are IVF twins is that right?

By the way, I am continuing to see my naturapath and have yet to have a discussion with him about my follow up RE appt. I am curious to hear what his take on all of this is, given that he has helped women in their 40's and 50's get pregnant without fertility meds etc.

I am not sure whether I should wait until I have the money to see Dr. Beer and follow his advice or whether I should start down the road to IVF with all the fertility treatments etc. as an adjunct to the other natural stuff I have been doing. Maybe that would up my odds of having a successful pregnancy that sticks next time.

My naturapath doctor had recommended that I wait until September to try to get pregnant again anyway, to give my body some time to heal from the miscarriage and also to stabilize my Epstein Barr/Chronic Fatigue syndrome.

Anyway, any more advice at this point would be so welcomed!

best to everyone,

BABY DUST TO ALL YOU FABULOUS LADIES!!!!

JADU


JADU

iVillage Member
Registered: 05-06-2004
Wed, 06-30-2004 - 4:24pm
Jadu,

I don't have any answers for you because I have never seen an RE before. I just made an appointment and wish I knew as much as you do already.

I want to say how deeply sorry I am for your losses and I hope that will be blessed with all that you dream of.

I wanted to ask you, how can you be a patient of Dr. Beers from NYC when he is in CA? I have to buy an individual insurance plan because my husband isn't working now. Does anyone know of the best plan that would cover any of these tests even if snuck under a unique code that is not fertility? Which company is the best?

I hope to learn as others help with your questions.

Mary

iVillage Member
Registered: 04-09-2004
Wed, 06-30-2004 - 5:20pm
Hi Mary,

Thanks for writing to me.

Dr. Beer does have patients all over and it is possible to be a patient of his and not see him. There are women on this board and graduates of this board who have seen him and had success with him.

Re: insurance, I too am still trying to find an individual insurance plan that will cover most of his costs. My current plan does not. Let me know if you find anything that works for you as I am also interested.

thanks

Baby dust to you!!

Jadu

iVillage Member
Registered: 09-27-2003
Thu, 07-01-2004 - 12:27am
Jadu,

I was so happy to read your post and to catch up on your news!

I'm glad you found an RE who takes your insurance. Believe me, that is a huge part of the battle. Which clinic is this? I am trying to place a Dr. Stein, but come up empty.

Your FSH is awesome! I have great expectations of how well you'll do with fertility treatments.

About the immune issues, I hope some more knowledgeable women will answer, since I am trying to find out myself. I had a consultation with an RE here who does more extensive immunology testing than most. He spoke at length about NK cells, and how if they identify over-active progenitors to these cells, they administer IVIG to keep the woman's uterus from attacking the embryo. (I hope I got that right.) I am not going to be treated by this RE, at least not for this cycle but I find the concept interesting and want to pursue this immune issue. I just contacted Dr. Darryl Carter of Nora (multiplemiscarriage.com) and I will try to get a consultation with him. I think he may do similar work to that of Dr. Beer. Who knows, maybe insurance will cover his work?

Jadu, I have also wondered about the repercussions, down the road, of fertility drugs. I think the IVF board posted some articles that state these drugs are not linked to increased cancers... I am going ahead with the drugs because I believe this is my best (maybe only) chance at this time.

I have been told that at "our age" IVF is the only rational choice. In your case, you have been able to conceive on your own so I don't know if it is as drastically needed (just my opinion--of course you need to weigh your own choices). I'm sure you have spoken with your RE about wanting to address the miscarriage issue--IVF does not do that, except possibly in that it allows for a "natural selection" of more than one embryo (hopefully) and therefore if the problem was the quality of the embryos this could be addressed. I believe you need your physician(s) to focus on that at least as much as on the getting you pregnant stuff...

Please keep us posted! All the best and I can't wait to hear what you decide to do!

Lisa

iVillage Member
Registered: 04-09-2004
Fri, 07-02-2004 - 6:26pm
Hi Lisa,

It was soooo great to hear from you too!! I have been really really busy so I haven't been on these boards a lot but whenever I have a free moment I get on it.

Dr. Stein is associated with St Lukes/Roosevelt, I don't remember the name of the practice. There is also a Dr. Keltz that practices there. I would love to check the RE you went to and see if they accept my insurance. Dr. Stein doesn't get involved with IVIG and the NK cell theory, but I can tell you one thing, it sounds like that is more along the lines of what has been happening with me.( I just have a hunch even though I am not a doctor).

Dr. Stein did say the same thing that you are saying about IVF and it possibly upping my chances of getting a good egg, and his theory is that the miscarriages I have had is due to poor quality eggs. I don't necessarily agree with him, and as I said in the earlier post, I want to save any fertility meds etc. as a last resort. In reading your post and thinking about all that I have read and heard from others, I think that my recurrent miscarriages is more than likely due to something else related to my immune issues, so the NK cell theory makes sense to me. By the way, based on the other Lisa's recommendation (ivflisa42) I did get that book The Infertility Cure. It is very good. Dominic the naturapath I am going to is already doing a lot of things she recommends for me, but I want to find a more reasonably priced acupuncturist to work with than Dr. Ken who is too expensive.

It is all pretty wild stuff to consider.

Let me know what the name of your RE is and I will call to find out if they accept my insurance. At least I got through the majority of the testing that rules out the main problems.

ciao for now

hugs

Jadu

iVillage Member
Registered: 12-26-2003
Sat, 07-03-2004 - 12:56am
Hi Jadu,

I think of you all the time & keep you in my prayers. I am happy to hear that you have had some more testing & all is well. You FSH is nice & low & that is a good sign. My perinatologist actually is reviewing all my files from Dr. Beer right now & making copies of what he wants so I don't have access to it until my next visit in a week 1/2 when he returns them to me. I have seen women though have basic immune testing & find nothing wrong but there are so many tests. Dr. Beer does more tests than anyone. I know I had way more tests than just the ones you mentioned. Did you have to fast for 12 hours before any of the testing? Was your DH's blood tested also for his DNA? Many of us have this problem of Recurrent M/C's due to what is called a DQ match between us & our DH's. Every person born gets a number from their mother & a # from their father. DH & I have a # in common. If the embie is the wrong combination it makes it difficult for my body to recognize it as a embie & produce the blocking antibodies found in PG to protect the embies from our immune system. Our immune systems attacks & kills the embies like a cancer. IVIG is protein from donor blood & supresses our immune system back to what it should be so it doesn't attack the embies. I had a couple of IVIG's to bring my #'s down to normal before this IVF cycle. After I did the embryo transfer I had the night sweats & my hair starting falling out. All signs of my immune system kicking into overdrive getting ready to attack the embies. I had blood drawn & sure enough my #'s were going up so I did more IVIG & it brought them back down. Of course I have to be tested frequently to keep tabs on this but it is so worth it. I am wondering if you can get less testing from DB since you already had a lot of the tests & save some $$ that way. I think he cost me something like $500 for the consult but the blood work was $1500. You may be able to save money on that because you shouldn't need to have all the tests done & can just give him the results of the tests you had. The $1500 is payable to Chicago Medical school not to DB & I have read some patients saying they took their coverage although mine (GHI) they don't take.

As far as IVF goes I used Repronex the first couple of cycles but not this last one. I have read that although it will help you produce more eggs the quality suffers & that you may be better off with a protocol of Bravelle (I was on this) or Gonal For Follistim which are also very good. There are possible side effects of these drugs the most common being OHSS where your body fills up with too much fliud. They will monitor you closely to make sure this doesn't happen. So many of us now are on these drugs & I don't hear anything about problems other than that. I had 3 embies put back & 2 took. The possiblity of multiples is high but not guaranteed. Multiples are higher with IUI's than IVFs as they can't control how many eggs fertilized & make their way to the uterus. Many of us recently seem to be having multiples but in the past months many were singletons. They will discuss with you how many embies to put back on the day of transfer based on your age & the quality of the embies.

I recall part of your history but can't remember if you had the fetus' tested after M/C's. If you did & there was nothing wrong with them then it is unlikely that the problem is due to egg quality. If no problems were found with the fetus' immune issues is your answer. If there were problems, IVF with PGD will help you.

I also see an acupucturist in Sommerville, NJ. He charges $60 a visit & is the best. His name is Dr. Golding. Do you live in Manhattan or are you from one of the boroughs or NJ?

Anything I can do to help I am just a post away!!! I so much want to see you posting us with the news of the birth of your baby in 2005!!!

Love,

Lisa
Lilypie Baby Days
iVillage Member
Registered: 04-09-2004
Thu, 07-08-2004 - 11:45am
Hi Lisa,

I too think about you a lot and send loving sticky vibes to you for those two little miracles you have there!

Thanks again for the fantastic information. I have been doing a lot of thinking about all the information I have gathered over the past month and I have decided not to go the route of fertility meds for now even though the RE I saw thinks that it would speed things up for me. I am going to follow the advice of the Naturapath I have been seeing. He wants me to wait one more cycle and then start trying to conceive again. I already feel much better after being on his program. My allergies seem to be less, I have more energy and I sense that my adrenals are starting to get stronger. Reading the book you recommended by Randine Lewis really has helped as well and a lot of what she says fits in with what he says. His theory is similar to hers in that there is no such thing as infertility unless you have gone through menopause, and even then, women who have started to menopause have sometimes been able to reverse that and then conceive. What you want to do is to create an environment in the body that would make it ideal for a growing fetus to stick and thrive. So if you are able to balance the body and strengthen the immune system to the point that it is working well enough to do what it is supposed to do, then you can keep a pregnancy.

I still believe that Dr. Beer will be a good adjunct to my naturapath and then maybe seeing a good acupuncturist who is affordable. Yours is totally affordable for me but I am not sure how far out that is from Manhattan. But hey, I am willing to travel for this cause!. As I have said before money is an issue for me right now but I expect that will change within the next 6 months and I think when I start working on conceiving again (probably in September), I will be in a better situation to consult with Dr. Beer. I think it will be good if we do some extra immune testing at that time to see how everything is with my body.

The one thing that we have not done is to have my BF's and my DNA tested to see if there are any issues there. He has been out of town, but gets back to town next week. He has an appointment in the beginning of August to get a bunch of tests and bloodwork done.

So for now I am just going to think positive thoughts, treat myself well, eat healthy foods, continue with my supplements and herbs from my naturapath and work on getting as strong and healthy as possible!

love from

Jadu