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My Tryptase has tested high, about 3x the upper limit of the normal range. I have chatted with several ppl who have POTS, and seem to have a Mast Cell disease, but not with anyone else with a high Trypase level. Anyone out there? Have you been tested?
I’m not diagnosed with POTS, but had just read a mention of high Tryptase and Mast Cell Disorders. I think I read it on a Mast Cell forum. See this link.
http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1307797360
Mary
Hi Gail, My kids were tested (me next), and came out negative, but as you’ll learn, mast cell dz is a booger to diagnosis. We responded very well to treatment and are now going on prescription Gastrocrom. There is a big movement to change the criteria for diagnosis because more than half of us are missed through traditional testing. You may find the “Patient Experience Letter” at this site helpful: http://mastocytosis.ca/
Please let us know how your treatment goes, OK?
Big hug,
DianaHi Mary… Thanks! I am aware that high Tryptase is an indicator of Mastocytosis, and am trying to pin down a diagnosis. I just not have ran across anyone else who has both???? Beginning to feel alone here.
Are you of Melungeon heritage? I probably am as well and have done a bit of reading about it. With my high Tryptase finding, I am beginning to wonder if some of the medical problems mentioned are related to Mast Cell Disease.
Dr D… what I have learned is that even if one has a high Tryptase level, it is still hard to get a diagnosis pinned down! Hopefully, thing will improve in this area. Good luck with the Gastrocrom. I have been taking it since last December, and have found it helps with Orthostatic Intolerance, something I really appreciate.
Hi Mary… Thanks! I am aware that high Tryptase is an indicator of Mastocytosis, and am trying to pin down a diagnosis. I just not have ran across anyone else who has both???? Beginning to feel alone here.
Are you of Melungeon heritage? I probably am as well and have done a bit of reading about it. With my high Tryptase finding, I am beginning to wonder if some of the medical problems mentioned are related to Mast Cell Disease.
Dr D… what I have learned is that even if one has a high Tryptase level, it is still hard to get a diagnosis pinned down! Hopefully, thing will improve in this area. Good luck with the Gastrocrom. I have been taking it since last December, and have found it helps with Orthostatic Intolerance, something I really appreciate.
YES! Gail, I’m noticing some orthostatic improvements, after about 2 months on Cromolyn. I had no place to go but up, you understand. My TTT caused an increase in 87 bpm’s in 10 minutes! Yikes! 🙂 Diana
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