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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Elevated Tryptase and POTS?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Elevated Tryptase and POTS?

  • This topic has 4 replies, 3 voices, and was last updated 11 years, 5 months ago by Dr. Diana.
Viewing 5 posts - 1 through 5 (of 5 total)
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    Posts
  • July 5, 2011 at 3:09 pm #47
    MGC.
    Participant

    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?

    July 10, 2011 at 5:43 pm #1305
    MaryInVa
    Participant

    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

    July 31, 2011 at 1:38 pm #1359
    Dr. Diana
    Keymaster

    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,
    Diana

    August 2, 2011 at 1:41 pm #1369
    MGC.
    Participant

    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.

    October 24, 2011 at 5:08 pm #1563
    Dr. Diana
    Keymaster

    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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