Wow that is high but I can tell you my father in law is 55 and he has no known experiences of shock and is 78, he found out his tryptase was 55 this winter. Some allergies, hashimotos, RA and colon cancer at 70. My youngest daughter (15) has a tryptase of 20 and her urine histamine levels where in the normal range.

Have you had your prostoglandins checked, that is done through urine and also another ingredient degranulated from mast cells.

A Bone Marrow biopsy is the gold standard for ruling out mastocytosis but its really important who does it and where, make sure its someone who is experienced in doing BMB for mast cells.

Besides all the itching do you have any other symptoms and what medications did the doctor recommend you take.

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.

Tin:
I agree that is a very high #. I'm a leaker sounds like you in some ways. Constant skin sensitivity problems. But mine is more a pain than an itch & my tryptase is 20. I as well have never shocked & in fact my doc said I didn't need to carry an epi at all. The one thing I didn't see in your meds was gastrocrom or if not in the US ketitofin, a mast cell stabilizer. This has been the most important add of all the meds that I take. Doesn't solve the skin issue but helps. Any more questions on skin issues let me know. Just realize mine is almost always internal only rarely an outbreak.
MikeV

It's possible to have the cKIT mutation and a negative biopsy (even a negative tryptase).  It's also possible to have biopsy-confirmed SM without the mutation.  We mast cell patients come in all flavors

Heather