I thought it sounded really high, too. As far as other symptoms, I'm covered in spots, head-to-toe. I suspect UP. They raise into hives when scratched and itch constantly (so they're always being scratched).
Systemically, I've had ridiculous reflux for the past 5 years (controlled with 2x daily Pepcid Complete until recently). I've also noticed some gastrointestinal issues recently, but nothing major and I've seen no connection to any type of triggers, so I can't even say these issues (and really, it's a stretch to call them issues) are connected to masto. Beyond that, I'm basically symptom free on the inside.
Oh, I almost forgot. In the last month, something strange has been happening with my fingertips. Over the course of about two weeks, the tips and area immediately under the nail get hard and desensitized. The skin thickens and then starts to crack. The hard skin then peels away...okay, I cut it off with nail clippers as it flakes. The new skin underneath is fine for about a week or so, then the process starts again. My PC thinks it's a circulation issue and I'm getting some type of ulceration of the skin because of it. He's not sure if it could be related to the masto. I've done some research and think it might be digital scleroderma. I'll be bringing it up at my next appointment.
In terms of medication, I'm on 5mg 1/day of the generic form of Xyzal and 20mg 1/day of Aciphex for the gerd. I also carry an epi-pen, but I've never needed it. The Aciphex works great, but it's non-formulary and really expensive ($280/month), so I think I'm going try something else. The levocetirizine (Xyzal) is an H1 blocker, so my hemat. suggested adding an H2. We also discussed upping the dose, but with the lower histamine levels of the last test, I'm not sure what he'll say.
We haven't done a urine test, and my hemat. wants to avoid a bmb if at all possible, and I'm inclined to agree with him.
Do you have an intro thread? Never mind, I'll check for it myself. From reading this thread, it seems like your family has some experience with this type of thing, so I'd like to get caught up on your story. I saw that your husband is doing better than a year ago, which is great! I'm right with you in your gratitude about this site. It's taught me that I have to take charge of this myself. My doctors are all very interested, but it seems I really have to get in the driver's seat.
Anyway, I've droned on for a while (doesn't it sometimes feel good to put this stuff down in writing). Thanks for listening.