1% less bone, 100% still standing

I had my endocrinologist appointment yesterday, which is basically my yearly check-in with my body.

We did the usual pre-appointment checks. My height is still 153cm / 5ft (short queen status unchanged haha!), and I clocked in at 46.8kg with normal blood pressure, 104 over 67, if you’re someone who likes specifics. All pretty steady on that front.

But, as always with congenital panhypopituitarism, it’s all in the fine print!

The Bone Bit

I had a bone density scan in March, and my doctor told me that my bone density has dropped again – about 1% in the past year. It’s not shocking, but it’s still a nudge in the wrong direction. I’ve had osteoporosis for a while now, so we expected some loss, but we both agreed it’s time to start treating it, since it’s clearly not improving.

There are two treatment routes: intravenous or medication. As I’m flying out next week, intravenous is out for now. It needs a bit of preparation (bloods, admin), and there just isn’t enough time. So medication it is: I’m starting Fosamax Plus, which contains Alendronate and vitamin D.

But of course, a spanner was thrown in as there’s a nationwide shortage of Fosamax Plus. The pharmacist recommended going on regular Fosamax Once Weekly for now, and after a quick email to my endocrinologist, I got a new prescription sorted and pills were collected.

I start tomorrow and will take them every Saturday morning. It’s one of those meds with rules; only in the mornings, empty stomach, full glass of water, and I have to stay upright (sitting or standing) for at least 30 minutes to make sure it reaches the stomach properly. I honestly struggle to drink water, so that’ll be a welcome challenge… and hopefully the start of a better habit. I can’t even have it with sparkling or flavoured water – just straight-up H₂O! 😂

If I do manage to get my hands on Fosamax Plus while I’m in Auckland, I’ll keep that original script handy too. Backup plans are key when you’re juggling rare meds and rare conditions!

Everything Else

The rest of the appointment was thankfully pretty uneventful. My current medications all stay the same, and my hormone levels seem normal. As usual, we’re repeating bloods next week to check levels again, and as some of my liver proteins were elevated. Probably nothing major, but I’ll hear from my doctor if so.

He also gave me another Solu Cortef emergency injection pack to carry while travelling. Very rarely, I can suffer an adrenal crisis, which requires the injection to help my body respond to stress when it can’t produce the cortisol it needs. Hopefully I won’t need it, but nonetheless, an essential just-in-case item.

Still Standing

These check-ins don’t usually bring big surprises, but they do bring clarity. They remind me that while my condition is rare and invisible to most people, it’s always worth tracking.

Yes, my bones are slightly more fragile than they were a year ago. But I’m still here, still standing, and still showing up for my health, one script, one blood test, one upright pill-swallowing session at a time!

My next endocrinologist appointment is in mid 2026, but he will be in touch via call/email.

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Do you have a yearly specialist check too? Or a medication routine that requires a weird ritual? I’d love to hear how you keep on top of it all.. drop me a comment below.