• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Tryptase results high

ebethc

Senior Member
Messages
1,901
my tryptase levels are high - 18.8 and the reference range is 2.2 to 13.2. Can anyone tell me if this is far enough out of range to warrant concern or treatment? I'm just learning about mast cell disorders, so I need help.

I don't have insurance or the money to go to a doctor - so, please, no "helpful" suggestions to "ask a doctor".

thanks.
 

ebethc

Senior Member
Messages
1,901
Are you having symptoms of mast cell activation?

I have allergy symptoms (itchy eyes, constant sinusitis & swollen, itchy throat, brain fog)... I get hives occasionally, but not my main complaint... I tested negative for every single allergen (scratch test AND blood test), so I started investigating mast cell disorders and histamine intolerance... Quercetin has always been very helpful for me; good results w mangosteen, too. Zyrtec is hit or miss, and Azelastine is pretty good... Everything else - nothing.

I have some gastrocrom, but I haven't started it yet...
 

halcyon

Senior Member
Messages
2,482
It sounds like tryptase over 20 ng/ml is more consistent with systemic mastocytosis and levels persistently over 15 ng/ml may point towards MCAS if the associated symptoms are present and there is a positive response to therapies.
 

ebethc

Senior Member
Messages
1,901
It sounds like tryptase over 20 ng/ml is more consistent with systemic mastocytosis and levels persistently over 15 ng/ml may point towards MCAS if the associated symptoms are present and there is a positive response to therapies.

thanks... It doesn't feel that severe, but it does feel like i have chronic, low level histamine issues that interfere w my immune system... occasional flare w hives and more severe symptoms..

What is the tx for MCAS?

thanks.
 

Gingergrrl

Senior Member
Messages
16,171
Look at Lisa Klimas blog "Mast Attack" and she explains everything in amazing detail. I have severe MCAS and high histamine and prostaglandin levels but my tryptase is always normal.

High tryptase is usually showing mastocytosis vs. MCAS.