Endocrinology Appointment for the Weak-Boned and Strong-Willed

My bone health has been an ongoing concern due to my anticonvulsants, several of which can cause decreased bone density, and to my eating disorder.

My dread of this year’s bone scan and endocrinologist appointment was not, then, entirely irrational, though it was admittedly a little extreme. Unsure whether or not I could handle the bad numbers that I suspected I would learn from them, I seriously considered trying to reschedule. In the end, however, I self-talked and CBTed my way first to the scan, then to the endocrinologist. There’s a therapy-skills win for you, if there ever was one.

The scan itself went fine. It was, of course, painless, and the technologist was an appropriate level of chatty—enough to ease along the process, not so much that I left knowing intimate details of her personal life. The only hitch was when the (very high-tech) machine had trouble reading my spine because of how that particular part of my anatomy curves, but the technologist resolved the issue in a way that didn’t make me feel like a weirdo for having bones that confuse a DXA scanner.

And then came my appointment with the endocrinologist. My usual doctor at this osteoporosis clinic is away on maternity leave, so I saw someone I hadn’t met, which certainly didn’t help my (crippling) anxiety. He was nice, if a little awkward—aren’t we all, though, in our own special ways—and delivered the not-so-great news relatively gently.

In short, and without beating around the proverbial bush, I had lost a lot of bone mass in both my spine and my hip. More than I’d considered I might, and coming from someone who leans towards pessimism (OK, fine … my glass is 51% empty), that’s saying something.

We discussed my options, which now include starting medication for osteoporosis. The major catch, as the doctor explained, is that it ideally isn’t used in women in their reproductive years because it isn’t safe in pregnancy. Since we have a clear, dual explanation for this dip, and since I got my eating back on track and my weight up relatively quickly, which will certainly help ensure that things don’t continue to deteriorate so rapidly, he suggested that we wait until next year’s scan, see what changes, if any, have taken place, and make a decision re medication then. In the meantime, I’m supposed to avoid bending, twisting, reaching, and heavy lifting because my risk for fractures is high. In other words, I have a doctor-sanctioned excuse to boss people around when I’m feeling lazy and don’t want to do stuff for myself.

Some of my favourite osteoporosis “medication.” #calcium
My favourite osteoporosis “medication.” #calcium

My hunch is that besides remaining diligent about my eating, the key to preserving (what remains of) my bone health/honeycomb bones will ultimately be tackling my medication load, which has already been a years-long, largely unsuccessful work in progress.

Sometimes—often—I feel as if something is eventually going to have to give when it comes to my AED situation. On the one hand, my epileptologist has been reluctant to discontinue any of my anticonvulsants, even taking my osteoporosis into account, since I continue to have seizures and he worries about the safety implications of disrupting whatever fragile equilibrium of medications and VNS has kept me relatively stable. On the other, I continue to have seizures despite being on all these meds, a couple of which I suspect are completely ineffective, so wouldn’t it make sense to experiment a little, especially considering the irreversible effects that the AEDs have on my body?

In the long term, all this will, I guess, be a lesson in acceptance. I’m still in the “this really sucks” phase, though.

I’ll get over it.

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5 thoughts on “Endocrinology Appointment for the Weak-Boned and Strong-Willed

  1. I’m so sorry, I hope the progression slows drastically (stops).
    I think I’d feel the same way about the seizure medication. I’d be afraid to tamper with it for fear of making things worse, but 8f I’m still symptomatic and they are causing harm I’d be considering trying to see if I could reduce them. But that’s a very difficult decision.
    I just wanted you to know I sympathize with you. 💕

  2. My mom has osteoporisi and so does my her mom. My mom chose to not take medication for it because it did not help her mom at all. I would look into what you can do to altnatives first like making sure you drink calcium and eat llots of vegetables and fruits. Take vitamin D which we as people with epilepsy already have to do right haha. also my mom puts I think turrmic in her water or bark something like that, I’ll have to ask her what all she does, but she also walks. every time she goes for check up she gets good results. so I would try that first. Also have you heard of deep brain stimulation? My epitologist or however it’s spelled wants me to look into that, maybe thats an option since nothing has worked for you.

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