Thursday, January 30, 2014

I Walk the Line

I walk the line... or at least I try to. The line that narrowly divides self-advocating and being obnoxious, asking the right questions and being "that" patient, trusting my own instinct and trusting the medical expertise of doctors and nurses.

First I need to say that this post goes well beyond my own experience in miscarriage. When Liam (my now 2 1/2 year old) had just reached his first birthday, I took him to his well-check Doctor's visit and spoke with his pediatrician about his lack of verbal skills. At that point he was only slightly delayed and a referral may have been premature but in retrospect we see that at 12 months he would have benefited from early intervention. At each subsequent well-check and sick-visit I brought up his lack of speech to our doctor. Admittedly it was hard to pinpoint exactly how many words he could use since he would use a word once then we wouldn't hear it again for months. That being said, I think I knew by 18mos that we really needed help but the doctor was determined that we would wait until his 2 year check up to see if he improved. At two years we got his referral. At 26mos his evaluation put him at an 8mo verbal level.

Also, I've spoken to many other people who have struggled with knowing when to push back and ask for more tests, a referral, answers, an appointment, so I share this as an encouragement.

Your doctor is in the exam room with your body for what, 20 minutes? You're with your body 24 hours a day. Just saying.

(I recognize that the flip side of the coin is that there are many people who abuse the 24 hour nurse call lines because they're paranoid. I'm blessed to have a sister who is a nurse and has worked in the ER; she talks me down from the "Oh my gosh I have to take James/Liam/myself to the emergency room right now" ledge.)

Now, back to my experience with doctors and miscarriage. When we lost our second baby the doctor explained that 25% of all pregnancies end in miscarriage or stillbirth. He started saying that they would run a few tests before we could try again but, glancing at my chart, he realized that we have two children already so "we know you can have babies." He explained that he and his wife had had a miscarriage in the middle of their four children and that we are "just on the wrong side of the percentages." He said all of this with an appropriate amount of compassion in his voice. But the more I've thought about it, the more unsettling that was to hear.

Every woman who has had a miscarriage or still born baby is on the wrong side of the percentages.

Every woman who has ever had a miscarriage or still born baby is on the wrong side of the percentages.

Natural Family Planning (NFP) is a way to chart certain signs that your body gives you about your fertility cycle so that you can either avoid or achieve pregnancy. One of the things you chart is your waking temperature. According to the book that I have, if your temperature is lower than 97.3F during a certain time of your cycle you may be experiencing low thyroid function. When I began to chart low temperatures I assumed that it wasn't a big deal and the book probably wasn't describing my symptoms. A few months after our second miscarriage I began to experience some pronounced exhaustion, inability to focus, and hair loss. The energy and focus problems felt like the first trimester of pregnancy and the hair loss was reminiscent of postpartum hair hell. The combination of these two sets of symptoms gave me the courage I needed to set up an appointment with my Primary Care Physician.

Going into the appointment I was nervous. I had to wait a few months to be seen since I was a new patient and by the time the appointment day arrived, I was no longer experiencing the extreme exhaustion, inability to focus, and hair loss. I was worried that my doctor wouldn't be familiar with NFP and that she would dismiss my concerns as illogical. Although she was not very familiar with NFP, she had heard of it and validated my concerns regarding my period of exhaustion. When I told her what the OBGYN said about not doing any testing in response to the miscarriages, she explained that we do know that there wouldn't be a genetic reason for the miscarriages since we've had two successful pregnancies but that things like hormone levels can fluctuate and there may be an answer there. She ordered a panel of blood work that would test my thyroid function and a few other things related to exhaustion (kidney function, Vitamin D, Vitamin B12, etc). When the results came back I was surprised to learn that everything was normal except for one thing. My Vitamin D level was very low.

The research that I've done on the internet regarding a link between Vitamin D deficiency and miscarriage has been inconclusive. What I mean is that there seems to be many people posting on forums and other places about a link but I wasn't able to find a reputable scientific website that connected the two. The most valid-sounding theory that I found suggested that low Vitamin D would cause the lining of the uterus to be thin, making it difficult for a fertilized egg to implant successfully, which would fit with my symptoms (early miscarriage with the bleeding starting quickly). All that to say, I know that Vitamin D may not have caused my miscarriages and I know that even if we get my levels up to normal that won't guarantee that I won't have another miscarriage, but-- there is a possibility that the miscarriages were caused or linked to my Vitamin D levels and that bringing my levels up will give us a good chance at a successful pregnancy in the future.

All in all, I'm frustrated that in the United States there is a standard of three miscarriages before beginning tests. I can understand wanting to avoid painful and invasive testing after the first miscarriage. But it took one needle stick and four vials of blood to determine that I have low Vitamin D. Between the two miscarriages I had blood taken 8-10 times, just to test my pregnancy hormone levels. It's mind-boggling to me that it was too much work? too expensive? too inconvenient? not covered by insurance? I'm not sure what keeps OBGYNs from doing a panel of blood work after the first miscarriage, but I don't understand it.

So my point is this: keep asking questions, do your own research and come to appointments prepared to make suggestions and requests, and trust your own instincts. You may not find any answers. You may not have low Vitamin D. But if you're having fertility issues or your kids are having developmental issues, what is the harm in getting tested? The worst that can happen is that you wind up with a bruised ego, you were overreacting and there's nothing wrong. But more and more, I'm finding that my instincts are good, and it's better to check... you might just find the answer you've been looking for.

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