Hi Hopeful
No I haven't and I also haven't heard anything about my pancreas other than it isn't swollen, so I will check that out. I have to see my doctor sooner rather than later for my annual gallbladder ultrasound, and a few other things, and we will no doubt discuss what to do next. He did mention genetic blood tests a bit ago, but they're expensive in this country and private insurance doesn't cover much. I will discuss it a little more with him. I'm a bit defeated after the rheumatologist visit and how dismissive he was because it wasn't in his lane. I mean, it's not normal to sit in a crop top besides a fan in a room full of blockout curtains to avoid looking like I've been sunburned in a ski mask, but he didn't even bat an eyelid lol oh well. I'll pop in after I see my nice doctor if he has anything to add.
Edited to add....looking into this SDS and it is ringing a bell in that my haematologist may have tested me for this over the while, or I've read about it along the way. I'll definitely chase it up because it certainly does resonate, doesn't it