We met with the infertility specialist yesterday (also known as an RE or reproductive endocrinologist). I'm really glad we decided to do this; the only regret I have is that I didn't do it earlier.
We were given a lot of information at our consult appointment.
1. My current doctors' diagnosis and treatment plan is wrong for my situation. The MTHFR mutation that I have is heterozygous, and it is on the "benign" gene. The problems I'm having are not related to this mutation. Additionally, if I did have the more dangerous form of this mutation, it is not typically treated with blood thinners. You treat it with 4mg of Folgar which lowers the homocysteine levels. He basically was irritated with my current doctors because they are treating my "history" rather than finding the cause of our problems. A lot of what he was telling me I had already read online. But there is so much contradictory information out there, you really don't have any option but to trust your doctor.
It goes without saying that I will be finding a new OB and perinatologist. In fact, I called this morning to get a referral, and the doctor emailed me himself with his recommendation less than an hour after I called! I was really impressed with how fast he returned my message.
2. We can mostly rule out various factors that cause repeat pregnancy loss, things like genetics (both me and Kevin have already been tested for this), hormonal (I don't exhibit any symptoms of hormonal problems like menstruation problems), environmental factors (I don't smoke), and probably low ovarian reserve since I'm not yet at an advanced maternal age. That leaves a few categories that we can't definitively rule out: uterine lining, immune, and bad luck.
3. He would like to run some additional tests to either find a cause or rule out other factors.
I have an appointment on Wednesday for a procedure to inspect my uterine lining. The doctor thinks the last c-section I had could have caused some scaring which is now causing the early miscarriages. A vertical incision into the uterus especially under emergency conditions can increase your risk for scarring. Apparently, this is easily remedied by removing the scar tissue.
He is also ordering a test (that insurance doesn't cover) that screens for natural killer cells that are too active. Natural killer cells are basically white blood cells that will typically attack anything foreign that enters your body. However if they are too active and don't respond properly to the father's genetic code, they will also attack the embryo causing miscarriage or pregnancy loss later. I'm not sure at this time how this is treated. Probably by lowing your immune system somehow, but that's just a guess.
There is also another immune response that can cause repeat pregnancy loss. This one works by antiphospholipid antibodies reacting to the placenta and creating clots around it thus compromising the pregnancy. These antibodies are present with other immune disorders such as lupus and rheumatoid arthritis, but their presence doesn't mean you have those disorders. This is treated with small amounts of blood thinners to help prevent clots forming. He did not order this test at this time because insurance doesn't cover this one either, but also because we were already screened for this after the first loss. However, the test that was done is not sensitive enough to detect any trace levels of this. However, he thinks that if I did have this, it probably would have shown up with their tests. We will probably go back and do this one if we don't have any answers from the other two tests.
The doctor did say that sometimes you can have a successful pregnancy at first with immune issues because it is like being exposed to an allergen - it's not the first exposure that's the worst, but the severity increases after each exposure.
I have an appointment on Wednesday for a procedure to inspect my uterine lining. The doctor thinks the last c-section I had could have caused some scaring which is now causing the early miscarriages. A vertical incision into the uterus especially under emergency conditions can increase your risk for scarring. Apparently, this is easily remedied by removing the scar tissue.
He is also ordering a test (that insurance doesn't cover) that screens for natural killer cells that are too active. Natural killer cells are basically white blood cells that will typically attack anything foreign that enters your body. However if they are too active and don't respond properly to the father's genetic code, they will also attack the embryo causing miscarriage or pregnancy loss later. I'm not sure at this time how this is treated. Probably by lowing your immune system somehow, but that's just a guess.
There is also another immune response that can cause repeat pregnancy loss. This one works by antiphospholipid antibodies reacting to the placenta and creating clots around it thus compromising the pregnancy. These antibodies are present with other immune disorders such as lupus and rheumatoid arthritis, but their presence doesn't mean you have those disorders. This is treated with small amounts of blood thinners to help prevent clots forming. He did not order this test at this time because insurance doesn't cover this one either, but also because we were already screened for this after the first loss. However, the test that was done is not sensitive enough to detect any trace levels of this. However, he thinks that if I did have this, it probably would have shown up with their tests. We will probably go back and do this one if we don't have any answers from the other two tests.
The doctor did say that sometimes you can have a successful pregnancy at first with immune issues because it is like being exposed to an allergen - it's not the first exposure that's the worst, but the severity increases after each exposure.
4. I found out this morning that we have zero coverage for infertility with our current insurance plan. Once a diagnosis is made, we are on our own. I am having a conference call tomorrow morning with the clinic's financial advisor to see how much IVF will cost and if we can even afford it at this time.
5. If we choose to do the IVF, I will also need a perinatologist sign off that I am not at increased risk for carrying twins. This clinic experiences a 25% chance of twins with IVF, and they do not want both babies or the mother's life to be in jeopardy.
5. If we choose to do the IVF, I will also need a perinatologist sign off that I am not at increased risk for carrying twins. This clinic experiences a 25% chance of twins with IVF, and they do not want both babies or the mother's life to be in jeopardy.
An encouraging bit of news is that this particular clinic has a 60% success rate for IVF, and they have the highest success rate in the Dallas area. I just hope we can get to the point that we have the means to be able to afford it! If anything, I hope that we can finally get some answers and at least have a treatment plan if we decide to try naturally. Now back to the waiting game...
sounds like you are in great hands...how encouraging!
ReplyDelete