The dutchtest, troubleshooting hormones, and at-home test kits

Recently, Dr. Hollywood and I had a check-in. We decided that a little more data is needed to get to the heart of my flare-up patterns.

Today I’m going to start a new collection of “data” with the dutchtest (Dried Urine Test for Comprehensive Hormones).

We chose this test because, after making a calendar of my symptoms, it’s clear that something dramatic is happening with my hormones. I can look at my calendar and subtract 10 days from the start of my menstrual cycle, and that shows exactly where all of my symptoms are at their worst. And, suddenly, after the cycle starts, the symptoms de-escalate. Months ago, when I mentioned this to a rheumatologist (who eventually gave up on my case) she looked at me quizzically and said, “I’m not aware of any pattern between autoimmune and menstrual cycle.”

Well, that doctor might not have been aware, but she is missing some vital information. For example, this article even highlights 10 medical conditions that have established links with menstrual cycle, and the first sentence of the abstract is pretty clear:

“Exacerbation of common medical and mental health disorders at specific phases of the menstrual cycle is a prevalent phenomenon. Although the precise cause is unclear, studies implicate complex interactions between the immune and neuroendocrine systems”

Rheumatoid Arthritis is in that list.

This brings me to a bit of a rant. I feel like I might have been able to circumvent some of what is going on with me if my doctors hadn’t been so quick to dismiss my symptoms when I looked “healthy” but still was pointing out issues.

In general doctors seem very quick to throw patients over the fence to an endocrinologist or OBGYN when they hear “female hormones” come into the picture. Sadly, for me, that resulted in a pile of different trial-and-error oral contraceptives that did nothing to solve my original problems. And, in fact, it probably contributed to the first stroke that I had while I was on a combo pill. Troubleshooting the balance of hormones has a long way to go. I had what was considered “one of the best” endocrinologists in my area before they left practice, and they did very little to get to the bottom of my issues.

At that time, though, I wasn’t as diligent about collecting my data and insisting that something be done. I kept hoping that the next hormone pill would magically solve it all. Why should I be concerned if the doctor wasn’t concerned?

In reality, I was digging myself into a bigger hole by being complacent.

This has been a huge lesson for me. I’ve learned that I need to educate doctors on my symptoms and my body and remain in the driver’s seat about being the expert on what is happening outside of the office. Plotting everything, every day, has given me irrefutable evidence of a pattern.

I’m going to dig deeper into literature to see what else might exist that connects autoimmune with menstrual cycle fluctuations. But that’s a digression for now.

Now, back to test kits. The dutchtest is beautiful! Not that it matters, but it was kind of nice to unfold this thing and explore. It’s made of nice paper and I just appreciate a pleasing design. It’s a dried urine test, so you stream urine on a piece of paper and then let it dry. Actually, several pieces of paper. You send it all back, and they give you an analysis of your hormones. In theory it sounds simple. Dr. Hollywood told me to wait until I felt my “absolute crappiest” this month and then use the kit.

Now the hard part. As the time nears for me to put this thing into use, I am feeling overwhelmed by the instructions.

If I start today, I need to do one “collection” at dinnertime and one at bedtime. Then, one overnight if I have to wake up to go to the bathroom. And two the next morning. That doesn’t sound so bad.

The opened test kit. The little pocket on the right has the papers for the samples. The diagram in the middle is trying to explain their rather complicated instructions for sample timing and collection.

But now, let’s get into the instructions for the rest of today:

  • No caffeine or “large fluid” intake after lunch today. What is a large fluid intake? I normally always have a water bottle with me to stay hydrated. Hm.
  • No fluids for 2 hours before dinnertime, and 2 hours before bedtime. So let’s see here. I usually eat dinner at 5pm. So from 3–5pm I can’t drink any fluids. And then I go to bed around 10pm. So between 8 and 10pm no fluids. So basically I get a 3 hour window where I can have a “small fluid” intake; between 5pm and 8pm.
  • Collect at dinnertime and bedtime (sample 1 and 2)
  • (At this point, I am starting to write out a schedule for myself on paper because this is so complicated).
  • Overnight, if you wake and use the bathroom collect only the first time.
  • Sample 3: within 10 minutes of waking (do not lay in bed awake)
  • Last sample — 2 hours after waking, no caffeine until last sample is collected.

I think I can handle that, but I’ve had to plug in a bunch of reminders on my phone. Right now I am in the “no fluids before dinner” time period.

This brings me to the topic of home test kits in general. They have a long way to go before they are easy enough to use to inspire confidence. While this one is nicely designed, it could still be a lot easier to use. There are too many opportunities for me to mess up the collection, and I want good data!

Okay, that’s all for now. I’ll report back with any snags and, of course, with the results. Can’t wait to see what comes back.

Update: I finished all of the sample collection and sent it off! One thing that I appreciate about this kit is how large the collection papers are. You don’t have to, um, “aim” too much and there’s no mess. I was very appreciative of this tiny detail when I got up at 2am and did the overnight collection with hazy vision.