On being your own medical advocate

You know your body better than anyone else does -
even your doctor.

I was recently reminded why this is so important.

My endocrinologist and I have been working on getting my hormones to what she considers to be optimal levels. Testosterone was easy; my body never wanted to produce it in the first place and my levels were low (even for a woman) after only a few months of therapy.

Estradiol, the primary female hormone.
Estradiol, the primary female hormone.

Estrogen has been a little bit stickier. Taking the maximum safe dose of oral estradiol, my levels are still about 40% lower than what she'd like. Because of that, at our last visit we decided to try switching from oral delivery to a transdermal patch. On paper it seemed like a perfect idea; the patch is a more reliable delivery method and (theoretically) has fewer side effects.

So I switched. And in a couple of days I was feeling like absolute crap. Anxiety, restlessness, fatigue, progressing to full-on depression - inside a week I was feeling like I had before I'd started hormone replacement. A lot of the physical symptoms of transition were fading, too (I won't get into details there, but trust me).

You gotta fight! For your right!
(to take medication that works for you)

Vivelle Dot transdermal estradiol
Transdermal estrogen
a great product, just not for me right now

If I didn't trust myself I would have just stuck with the prescription and suffered. But I know my body, and I know how my brain works. Something inside me was telling me I wasn't getting enough of the drug. So I did some research and... well, there were a bunch of possibilities. My estrogen level could be too low. My levels could be high or where they were supposed to be and my body just needed time to adjust. My testosterone could even be creeping back up - it turns out that oral estrogen inhibits testosterone while the transdermal does not.

Anyway I wasn't going to let this slide so I called my doc. She was understanding (have I mentioned she's awesome?) and offered to put me back on the oral medication. I told her sure, but first I wanted to do some science. I'd have to switch to transdermal delivery sooner or later, and it could be a useful augment to oral medication in the short term, so it might pay to see what was actually happening. I asked her to order me tests for both estrogen and testosterone, which I could get drawn at my local clinic. I told her that I was willing to suffer (FOR SCIENCE!) until Monday so we could get a more reliable reading.

You know what? She totally agreed. I went first thing this morning, got the tests, and went back on my old meds. By this evening I was feeling like a million bucks again. I can also look forward to coming up with a new plan with my doc when the results come in. It's a pretty great situation to be in.

Anyway, moral of the story is:

If you feel bad then something is probably wrong.
(and more information is always better)

[Note that some drugs are going to make you feel crummy, like chemo and interferon. That's not always a bad sign, though there may still be other options that work better for you. --Ed.]

I knew this because I'd been in a similar situation before. When I was first diagnosed with ulcerative colitis, the doctors tried everything to get the disease under control. When the drugs failed they even talked about completely removing my large intestine - a procedure that would have left me crapping in a bag for the rest of my life. Fortunately, I went and got a second opinion from a top specialist up at the University of Chicago, and after some blood tests (are you noticing a pattern here?) we determined that one of the drugs we thought was failing was instead being broken down by my liver before it could do anything. We doubled the dosage and within two weeks I was feeling better.

Azathioprine, an immunosuppressant
Azathioprine, an immunosuppressant

That worked out for a few years - until I started to feel lethargic. It came on gradually, but over time I had a harder and harder time focusing; I felt weak; I would get tired more easily. That same drug I mentioned before is an immunosuppressant and can lower red and white blood cell counts; routine tests I had to get every month were showing mixed results with some numbers low and some normal. The doctors told me that they were fine but I knew my body and insisted on lowering my dose of the medication.

Unsurprisingly, it didn't take long after dropping my dose for my energy to come back - on the higher dose I had literally not had enough blood to function properly, and now I did again. Since then we've modified my doses a number of times. It's actually really easy: if I start seeing colitis symptoms they're too low; if I start to feel anemic they're too high. But if I didn't trust myself and my body I wouldn't have been able to wrangle control of my meds away from well-meaning docs who unfortunately had a one-size-fits-all mentality. (I can also say that my gastroenterology team here in Virginia has been nothing but helpful and cooperative and has let me lead on this.)

So why am I telling you all this nitty-gritty about my medical history? Because I want you to learn from my experiences! I want you to become an active participant in managing your own health. When faced with a medical issue that requires maintenance:

  • Research your condition and the drugs used to treat it - including both new, fancy drugs and old standbys (sometimes the older drugs are better).
  • Learn how each drug works in the body, how long it stays in your system, and what the side-effects are.
  • If you're not seeing the results you expect or you're experiencing unpleasant side-effects, don't be afraid to talk to your doctor.
  • If there is a thing that can be measured easily to see how well your drugs are working (or how badly they're messing with your system) and it's not currently being measured, then for god's sake measure it!
  • If your doctor wants to change your medication, make it a conversation. Make sure they explain why they're doing it and what they expect to achieve - and make sure you agree with their approach.
  • Most importantly:

Remember that this is your body -
you know it best, and you have to live in it.
Take charge!

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