Monday, February 4, 2013

Answers? Or -- maybe not.

Looking at the ocean and sky always reminds me of God's bigness,
and that He's always in control.
Image from:

You may remember me saying that I just KNEW my hormones were off.

Turns out, I was wrong.

They weren't off at all -- they were perfectly within the normal range. And I don't mean they were on one extreme or the other of the normal range. They were right, smack dab in the middle of normal. My hormones are the average of average.


I think that should have made me feel better, but it certainly didn't. Not that I WANT something to be wrong with me, but I absolutely believe something is ALREADY wrong with me, and I just want to know what it is so I can fix it.

Thankfully, 6 weeks ago I scheduled a doctor's appointment so I could go over all my questions.

And boy, did I have a lot.

Here was my list I went over:

  • Anti-depressants:
    • Anxiety
    • Weight loss
    • Exhaustion
    • Definitely depressed, but need a new prescription.

  • My miscarriage in October:
    • Any affect on my fertility prognosis?
    • What about my low progesterone during that pregnancy?
    • Why did my baby not develop, but I made it to 8 weeks?
    • Is there still any chance it was ectopic?

  • Hormones:
    • I feel imbalanced. Skin broken out, low sex drive (Sorry if tmi), horrible PMS, short cycles, lots of spotting and weird bleeding. How could I NOT be imbalanced?
    • Do I need to be on birth control?
    • Do I still need a progesterone supplement?
    • Was the timing right on my hormone testing?
    • Is there a chance I have a leutal phase defect?

  • What other tests can we run:
    • I just learned blood clotting runs in our family.
    • Could it be my thyroid?

  • Diet:
    • Am I underweight, and could that be contributing to some of my issues?
    • Am I eating too few calories?
    • Is vegan OK?

  • Future pregnancy:
    • Is she OK that I'm going to be a high-needs patient?
    • Will I need to do the quantitative hCG again? If so, is there a way that I could choose NOT to find out my specific levels unless I ask?
    • Is there anything else she recommends I do that I'm not currently doing?

That was my long litany of questions, that Maddy (amazingly) played through very well, in spite of the fact that my appointment already started an hour late.

My Dr. was SUPER patient and acted like she had all the time in the world to go over all my questions. So here was the rundown of her answers:
  • She took me off Zoloft, and put me on Celexa with a smaller dosage, in hopes of counter balancing some of the anxiety the Zoloft caused.

  • With my miscarriage, she doesn't feel that it puts me in the infertility realm -- although she said she would refer me to a fertility doctor in case I wanted that. (Since my insurance does NOT cover infertility at all, we decided that was not an option.) She did not say why my progesterone was low, but did say she thought either it was a bad egg or bad sperm and something was just not going right there. She felt very confident, however, that the baby cleared my tubes and did implant in the right place this time.

  • As for my hormones, she went over all my numbers and the averages, as well as my ultrasound pictures of my (empty) uterus with my last pregnancies. Everything hormone and uterus-wise looks pretty normal. She would be OK with me taking progesterone again, and did not feel I had a leutal phase defect.

  • She looked at my charts, and did confirm that I was ovulating regularly, albeit early in my cycle. The bleeding and spotting I'm having is NOT normal, neither is my crazy PMS, acne, etc. She didn't WANT me to have a thyroid issue, but thought that would be the easiest solution. She ordered that blood test.

  • Since my hormones (regular though they were) were not being very nice to me, she said I either needed to get pregnant right away, or I needed to take a break for about 6 months and go on birth control in hopes of regulating them more. In order to help me get pregnant, she prescribed Clomid and gave me instructions on how to use that.

  • With the clotting issues our family has, she said taking the baby aspirin every day wouldn't hurt.

  • As far as my diet, I am underweight (I know, big shocker there). She said that my body might not have enough reserves to sustain a pregnancy, and so my body is sort of "going on strike" refusing to get pregnant if it doesn't feel it can sustain it. Her solution was to put ice cream in my protein shakes and add more oil, cheese, avocados, yogurt and full-fat dairy to my diet. While I will be trying to add more healthy fats to my diet, I must admit that this weekend I really just ate whatever I wanted.  I do miss cheese, so I don't think I will mind adding that back in for a little while. She said in most cases, she would be thrilled to have a patient come in and have a diet like mine -- however, in my case it's simply not enough. She wants me to gain 5 - 10 lbs. And so I am now on a mission to gain weight.

  • As far as a future pregnancy, I really feel that she is fine with me being high-needs as was evident by the fact that she took 40 min with me, even though she just came from surgery and was an hour behind in her rotations. And yet I never felt rushed, not even for a moment. She still felt confident I could carry a baby to term. And she understood that the ups and downs of quantitative testing might be too much for me, and said she could instruct her nurses not to give me the numbers unless I asked. (But she would keep me in the loop as far as how things were generally going.)

At the end of the appointment, I let her know about the blood clotting family history. And as a side note (thinking it was irrelevant), I let her know that I was also made aware recently that I have a family history of lupus.

That seemed to set her on edge a bit, and right away ordered testing for an autoimmune disorder. Down for blood work I went, where the phlebotomist knew me now by name.

After my appointment, I felt so much better. Finally, I had some answers. I had the plan. I had the prescriptions. I felt ready to move on with pregnancy, and get this thing going!

But, as it seems to happen these days, having a plan doesn't last for long.

The next day, I got a message from the nurse that they needed to go over my blood work with me.

 Right away, I knew that wasn't a good sign. Usually, when things are fine, they just leave a message saying all is well. You only get told to call back when there is a problem.

I must admit I was hoping for a thyroid issue, as my doctor said that would be the easiest answer. But my thyroid was fine. Instead, my autoimmune panel came back positive for ANAs (anti-nuclear antibodies) and rheumatoid arthritis.

Of course, the nurse couldn't actually TELL me what that meant. She just said that I would be referred out to a rheumatologist, and my new doctor would contact me for an appointment and more testing.

I must admit, I cried when I found out.

It just seems that as I am on this quest for answers, I just keep stumbling upon more questions. It's like the journey toward answers is the same as the journey for grief -- you just keep going in circles, and when you finally think you've gained some ground, you realize you were right back where you started.

For several days now, I've known that I likely have an autoimmune disorder. Which actually makes HELLP syndrome, shingles at a young age, and my mononucleosis make more sense. It makes more sense why I've always been kinda "sickly." (ugh, I hate that word.)

But I don't know for sure that I do have a disorder, or if it's something else. Or if it's just a false positive. I don't know what kind of tests the rheumatologist will run. I don't know how that positive result will affect my fertility.

If I do have lupus, it will double my risk of preeclampsia (or so I've read). Will I be ULTRA high-risk now?  I don't know for sure though if it's lupus. I don't know if I am facing a life of chronic pain, or if it's just really no big deal.

I have no idea what to think. And since I'm already anxiety-prone, not knowing if I have a chronic condition that will interfere with my quality of life is stressing me out. It's so hard for me not to go down the road of what-ifs.

It also further makes me hate my body. I think my body is a baby killer, and I hate it for that.

So, I guess I will keep waiting for a call. And if I haven't heard back from the rheumatologist by Monday, then I will call Tuesday and see if I can go ahead and just set up the appointment.

Well, at least I had some answers for a whole day, right? That has to count for something.

1 comment:

  1. I think this is good, Rachel. Getting answers (albeit hard ones, even ones that require more and more investigation) is a good thing. It seems to me that you're making forward progress. Good for you for pressing on! You'll be in my thoughts, as always.