Back in November, I wrote to you about my lab results, which finally revealed what has been making pregnancy so difficult for me. (More on that later.) What I didn’t have a chance to tell you is that a month later, I received a call from the doctor’s office that the lab had not sent them all of my test results. It turns out, I also have a progesterone issue (no surprise there since I’ve had to take pills to up my progesterone levels for 2.5 years). My previous doctors, especially the Reproductive Endocrinologist I saw for a year, took blood samples to check my progesterone levels every single month 9 days after I ovulated. On medication, my number was always high enough to support a pregnancy. However, because I only had one known miscarriage, those doctors never checked the stability of my progesterone levels as my cycles came to an end. Since no one had ever checked that, my new doctor thought it wise to test my progesterone and estradiol levels 9, 11, and 13 days post ovulation (this was back in November, but the lab didn’t send the results of those tests until December). On day 9 post ovulation, doctors like to see a woman’s progesterone level at 15 or higher (or some doctors say 16 or above), and that number should stay about the same (or go higher). Here were my numbers from November: 14.1, 12.8, and 6.6. As you can see, I didn’t even hit the mark on day 9, and my number drastically fell as the cycle went on. (Surprisingly enough, 14.1 is MUCH higher than it was when we first started seeing doctors for infertility.) The rapid decrease in progesterone as a cycle comes to an end is a major cause of miscarriage (although my number on that particular month didn’t even get high enough to support the start of a pregnancy).
So what does that mean for me? I now take a 200 mg progesterone supplement for 10 days starting 3 days after ovulation. The nurse told me I need to take the pills at night shortly before going to bed, because they cause fatigue. Fatigue is an understatement. I take the pill at 9:00 pm every night that I’m supposed to, and I don’t even go to sleep until around 10:30, yet I wake up EXHAUSTED and stay lethargic and sleepy all day. I’m talking exhaustion so bad my entire body aches. It is the most miserable feeling. Not to mention, I take it at 9:00 and am practically falling over by 9:30. I don’t know why my body responds this way to the progesterone, but it is TERRIBLE!! The first cycle I took it, I kept telling myself that it would be worth it when I had a big round belly housing our first child, but that didn’t happen. And now I’m taking it again and I feel completely exhausted again. I’m not very happy about it either. The nurse assured me that I should see great improvements in my PMS while taking these supplements, and that’s how we’ll know if the dosage is correct (although if the dosage were correct, wouldn’t I get pregnant?). But of course things are never that easy for me, or so it seems. The nurse was certainly right about one thing: my PMS symptoms changed. In fact, they were far worse than usual! One symptom even brought great concern to my husband and me, so I contacted the nurse, and she was totally stumped. She spoke with the doctor and he seemed stumped, too. So their advice? Try again this cycle and see if that was just an anomaly or a new problem that comes with the progesterone. Sigh. Why can’t this be easy for me?
Anyway, to top it off, I not only have to worry about birth defects and miscarriage due to my genetic mutation/blood clotting disorder, but now I have to worry about my hormone levels causing a miscarriage even into the 2nd trimester of a pregnancy (if we ever get to that point). The doctor has guaranteed me I will be on progesterone supplements throughout my entire first trimester if I become pregnant. In addition, we’ll have to monitor my hormone levels throughout the pregnancy, and we may even need to do progesterone shots at home to maintain a healthy pregnancy. I just pray that I will learn to place all my fears in God’s hands, because that’s really all I can do (and follow the doctor’s orders, of course).
Now, as promised in the beginning of this post, more info on my lab results. If you’ve been reading my blog for a long time, you may remember all the issues I used to have with our insurance when we lived in Alabama. It turns out Illinois is not much better. I received a letter in the mail today stating our insurance provider’s “Medical Director” has reviewed my claim and does not believe my doctor had enough evidence to support him ordering the gene analysis for me; therefore, they are denying my claim. Get this: They sent me an overview of my claim back in November saying they had already paid the lab in full (after my copay) for all of the blood work I had done that month, including the gene analysis. What does this mean? I was very confused reading this letter since they already paid for that service. How can they deny it after they’ve already paid for it? So, I called my insurance company and asked the representative to look up my file, read the letter, and explain it to me. She informed me that AFTER paying the lab for their service, they wrote the lab a letter asking for their money back for just the gene analysis, which they gave them. She told me I should be expecting a bill for *a large sum of money* in the next week or two from the lab. I asked her to explain how and why they would do that, and she said after they paid for it, their “Medical Director” reviewed the claim once more and he didn’t feel my doctor had enough reasons to order the gene analysis for me. In fact, he said there was “insufficient published scientific evidence in peer-reviewed medical literature” to support this intervention for me. I told the insurance representative, “But the doctor was right. I tested positive for the genetic mutation. And there is definitely scientific evidence in peer-reviewed medical literature to support people with this mutation seeking treatment, because if left untreated, this can result in birth defects, stroke, heart disease, etc. So if my doctor was right and I tested positive, then shouldn’t insurance pay for it? I mean, they obviously thought they should cover it originally, because you paid for it and then took the money back and said you changed your minds.” She told me it doesn’t matter that I tested positive, because their doctor believes that test shouldn’t have been ordered for me in the first place. Therefore, they will not pay for the test itself or for my medication. ??? I really don’t understand that. My doctor was right! And coincidentally, they didn’t change their minds until AFTER the test showed my doctor was right and I filled my prescription twice!
If you can’t tell, insurance companies really irritate me! I’ve been dealing with them for far too long. My heart races every time I see a letter from them in the mail–seriously! They say they are here to help people, and they are very happy to take our money every month (and our insurance is not cheap, let me tell you), but as soon as something is actually wrong with you, they don’t want to pay for it. That would cut into their profits. Grrr. I guess insurance companies are businesses like everybody else. My plan is to appeal their decision, but naturally, the insurance rep told me I shouldn’t waste my time because people rarely win and I would be better off disputing it with my doctor’s office and trying to get them to pay for the lab. I am not doing that. It’s not their problem. I already spoke with them, and they checked my insurance benefits before ordering the tests, and my benefits say all labs ordered by a doctor are covered in full after a copay. And with all I pay for this insurance, I certainly shouldn’t be the one to pay for the lab, especially since my benefits package says all labs ordered by a doctor are covered by my insurance! The woman told me I have 180 days to file my appeal and then I shouldn’t expect a decision to be made for about 2 months after they receive my appeal. I know how this works. Maybe we’ll have an answer by next January after I’ve already forked over the money for the bill, because the lab won’t want to wait around for their money. This has already happened to us before. Our previous insurance in Alabama told us they would pay for genetic testing and even strongly encouraged couples to have it done before having children. I didn’t want the testing done, because I don’t care what we are predisposed for–I would still choose life no matter what could potentially be wrong with my children. But, the nurses convinced us to do it, because she told me these horror stories about families who had children with severe birth defects when they didn’t even know they carried the genes for these defects. She told us we would be much better off to have a warning so we weren’t so shocked. Looking back, I wish I would have asked her to stop talking and refused the testing, but I didn’t. We had the testing done, and then we spent an entire year fighting the insurance company to pay for it like they told us they would. In the end, mine was covered and we had to pay well over $500 for Choi’s and then they covered the rest (which makes me mad to this day because they told us before we had the testing done that it would be covered in full!).
As you can see, I’m quite frustrated after dealing with the insurance company today in addition to the fact that I am truly exhausted from those darn progesterone supplements that may not even be working. But, despite all my frustrations, I am still truly thankful to have insurance and medicine. I am blessed, even if these blessings can sometimes be frustrating. 🙂
This Luminous Road I Travel 