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Thursday, September 14, 2006

Reproductive Immunology

Rainy day. Poopie mood.

In writing about my three past OBs and reading about reproductive immunology and speaking with Lisa (who is Lisa? Wait? Has she mentioned Lisa before?), I've sort of answered my own question by now. With the only problem being that the answer is "get the testing done" which leads to two questions--by whom and with what money?

Oh...wait...the question.

After the twins were born, the OB who delivered them (who was the doctor on-duty that night at the hospital) sat down in my room and said she wanted to talk to me. It's never a good sign, by the way, when a doctor sits down. The babies were IUGR (intrauterine growth restriction) which means that they stopped growing in utero. They discovered this at 34 weeks and they were delivered that day. What could have been a huge problem leading to stillbirth was averted due to careful monitoring. Let's at least thank OB #3 for following the guidelines for monitoring twin births. I've heard stories of OBs who don't.

IUGR is sometimes caused by a clotting disorder (thrombophilia). Thrombophilia can also impede fertility and cause miscarriages. I had told this doctor about my fertility history while in labour, and putting all clues together (problems with implantation, IUGR babies), she told me that thrombophilia was a possibility. She said I should be tested for this because it's important information to know not only if I want to get pregnant again. Thrombophilia can lead to other health problems later in life. So there you have it--go have fun with your new kids and try not to think about it!

When I went to the new OB, he laughed at me when I said that I wanted to be tested for a clotting disorder. He told me that reproductive immunology wasn't real science and that I didn't have a problem. Really? You can diagnose that with just your eyes? Amazing. But I'd still rather have a blood test.

Paz, who I've mentioned before (the chickie who kicked off Common Thread) was the first person I knew who benefitted from reproductive immunology and I started poking around to see if some of these things could apply to me. Then Lisa ('s where she's mentioning Lisa) sent me this email:

My RE tested me after our second failed cycle and found elevated levels of IGM which may or may not mean a potential problem. He put me on Lovenox and baby aspirin for the remaining three cycles (which obviously did not help) but then my RE at Cornell told me he didn't believe in the whole immunology thing and wouldn't prescribe Lovenox. When I went to my OB once I was pregnant, he saw the previous test results and asked why I wasn't on Lovenox. He sent me to a hematologist who put me back on it, but by then I was 12 weeks pregnant. I learned first hand how controversial the whole issue can be in the medical community. One thing I learned through this whole process: medicine is an art, not a science.

Lisa has pretty much the most rockin' Secret Hope Story ever. She was over this week and we were talking about the controversy surrounding reproductive immunology. I had no idea that this division existed in the medical world, and the varying reactions made sense. The doctor who took it very seriously and urged me to get tested. The doctor who laughed it all off. And the ones in between who shrugged their shoulders and said, "maybe."

And the patient in the middle who is circling the drain of what ifs. Who is admittedly a bit of a freak about worrying about the future. Early on in the relationship, I took Josh on an 18-mile canoe ride. Trapped in a boat on still water, he paddled hard to get back to the car and away from my incessant what ifs that I was using to see if he was husband material. Could he handle what ifs day in and day out? How well did he thrive when peppered with what ifs that involved nazis taking over America and forcing him to choose between me and every other loved one in his life?

That established, what if there is something to reproductive immunology and a simple blood test holds the key to whether I try for a few months or a few years to conceive again? What if taking heparin and some aspirin can keep another child from being IUGR (and two pounds at birth)? What if this knowledge can keep me from other medical problems such as a blood clot later in life? The answer is simple: take the blood test.


Do I go to the OB who has already laughed me off and ask him to order it? Would he be aggressive and order the right lab work when he seems to have little respect for reproductive immunology? Do I make an appointment with my RE and jump back to his office even though I'm not completely ready to be back at the RE and I have no idea where he stands with this? Do I skip all known doctors and go straight to a hematologist? Two options not on the table--going to the doctor who suggested this in the first place since she no longer works at the hospital OR switching OBs.

I know most of you are screaming, "run don't walk" when I tell you my OB laughed at me. Didn't I learn anything from my three previous OBs? I promise you that I did. I stay with my OB for two reasons: (1) the RE recommended him because he refers out quickly to the clinic. He takes fertility issues seriously and when I met with him, he recommended only trying for three times on my own before returning to the clinic. (2) When you start throwing out OBs over every snicker, you're going to be left with your vagina hanging in the wind because OBs altogether are a very smug group of know-it-alls. It could be the "playing G-d" status they have of bringing life into the world. But he took my other concerns seriously and spent over an hour speaking with me at my first appointment and pap smear. Can I blame him if he is siding with the anticontroversy on a controversial topic? And to be frank, I'm just tired. My standards have become too high for an OB. I want them to gallop up to my doorstep on a white horse and examine my hoo-haa while I remain in bed, watching the Food Network. And...well...the short of it is that I am sticking with this OB for the time being.

The next BUT.

If insurance is not going to pay for this, do I push for the tests? I know the knee-jerk answer is "yes." But at the end of the day, I'm not a doctor with a plethora of additional information about hormones and blood disorders at my fingertips. I earned my honourary medical degree from the stirrups, which is obviously different from taking actual medical tests. Tests shmests. That said, if a doctor says it's not necessary, do I push forward and say, "it is!" without proof of negligence over my health care?

Because at the end of the day, we're passing the financial corner of the Bermuda Triangle of Infertility and the triangle is threatening to swallow us alive if we test these waters. We just don't have the money. So I am also looking for advice from people who have had this type of blood work completed and had insurance cover it.

Which sucks. Bigtime. To make medical decisions based on money. I know all people who aren't independently wealthy consider the financial aspects when making medical decisions. But...well...I just want it to be different.

As I said, writing about it this much has made me figure out my next step somewhat. At least for the time being unless you have advice--by all means, pass it my way. And by figure out the next step, it is the idea my husband came up with last night. Go to my GP. Someone neutral who probably knows little about reproductive immunology. Who will refer me to a hematologist. So it looks better for insurance reasons. So the person doing the diagnosing is actually a doctor rather than one who plays one on the computer. Appointment is next Thursday. Come with me as we delve deep into the immunology controversy. Which makes this sound a bit less like a soap opera and a bit more like one of those sensational news shows. But whatever. I mean, it's not like it's a big deal. It's JUST MY HEALTH!



Murray said...

I don't have time to read your current post right now and comment on it but I thought you would be interested in this recent post at: 'turned off'.

Interesting topic for a future post. I've found this to be true also.

serenity said...

No advice, but Spark ( is big on the immunology - I know that she paid out of pocket, but got it done and is largely using natural methods to try and overcome it.

I think your plan to go to a GP to try and get insurance to cover it is a good one. Keep us posted.

And I have to remark that your phrase "left with your vagina hanging in the wind" made me laugh out loud, thus causing me to spit out my water, requiring me to clean off my computer screen. Very well done. :)

Piccinigirl said...

I have no advice..c'mon it's me.
However I wish you lots of luck with the appt. I'll be waiting to hear how it goes.

Summer said...

I think you've just described some of the most frustrating things about dealing with infertility (and probably any medical issue). What happens when you have different doctors giving you different (and completely opposite) opinions? What if you think you should be tested for something, but your doctor doesn't agree? Do you keep pushing with your Google University knowledge or do you trust the doctor's experience? Which doctor should you trust?

It's a struggle I'm trying to sort out myself. Lately, I've been looking into these direct access testing labs where you can basically request and purchase blood tests. They usually are a lot less expensive than if you go through your doctor's office and there is no fighting doctors' differing opinions. I've read that some of them actually use the same labs your doctor's office would use if they had ordered the tests. I'm still doing the research so haven't tried one out yet. And I don't know of anyone who has used one of these to ask them what they think about it.

Of course you have to pay out of pocket for these tests if you use one of these services, but on the other hand, you don't have to hassle with your doctor either.

Carey said...

I agree that going through your GP is probably a good route to go... try and work the system and get the insurance company to cover it!

Unfortunately, I don't have any experience in this area... just enough to know that some doctors don't buy into it, while others do.

Murray said...

GP route is a good idea. I know nothing about this stuff but I always value an 'objective' opinion.

About my other post. It's not the popularity thing that bothers me (though I do think that's super weird - do you blog for comments or to work out your problems in a written way?). It's more the support being there for her when she was hurting and now not so much. I understand it of course. If you're doing well then presumable you don't need the support as much. But what it probably feels like is kind of being abandoned now that she's pregnant... I don't know. It's all just so complicated sometimes.

Lisa P. said...

Just a comment with some (possible?) advice... I saw a hematologist for a while for my diagnosis of MTHFR (which is not immunology but genetic)... and the hematologist *I* saw did not seem to know anything about reproductive immunology. (He was also not worried much about my being homozygous MTHFR, because my homocysteine levels were normal, and I didn't get much further than that with him.) It got worse from there - a hematologist that he referred me to even refused to acknowledge reproductive immunology as a real topic (but that's another story...) I guess all I'm saying is before getting referred to a hematologist, check to see if there isn't an RI in your area who might be a better choice.

Christi said...

I look at immunology the same way as I look at acupuncture--it's not like it's going to negatively effect my fertility situation. So if it HELPS, score one for me!

Leggy said...

I'm with Lisa P- I had a similar experience with a hemotologist. Also, my GP though RI was totally ridiculous whereas my RE was open to testing. And it came back borderline, but since I've had 2 m/c and only have six embryos to work with (Because I AM NOT DOING THIS AGAIN), we're going the route of natural FET + baby aspirin + heparin.

Have you read my "Try #5" category? I've had a lot of discussion on the whirlwind that is RI and whether its all bunk or not.

Oh, and another thing, for a variety of reasons I'm concerned there were IUGR issues with my son (I had pre-e and he was induced @ 37 weeks) that may happen again except no one paid attention to it the first time. My OB was a pat on the head/its all going to be fine kind of gal, so it was hard to get a straight answer from her.

It all just makes me want to run for the hills.

Good luck with the appointment. Hope you get answers and not head spins.

smartmama said...

just visiting- i had 1 live birth (with PRe-E) and 7 m/cs before being dxed with thrombophilia- I live in MA so I it was covered by ins under the infertility mandates (I have MTHFR and protein S deficientcy) It is hard- some stuff people consider close to voodoo- I read alot, researched alot- and pursued the treatment I felt was logical- it did work for me- afer 7 losses it was the only aswers anyone could give. have you been to the INCIID discussion boards- I know carolyn coulam is one of the big experts runs a whole board there on Repro immun.