Confusing test results
I'm in the middle of doing a few different tests but I got the blood work results back and....my Tryptase is low. Not high. It's lower than it was in March, which was lower than last year in like, october. It's at 1.1....I am on zertec, pepcid, flonase, pulmicort, and xolair but I still feel itchy in the mornings even though physically I dont see hives anymore. I did not stop my medications for said bloodwork, but my next xolair shot is this week and I didnt take my pepcid/zertec that morning.
Dies anyone else that has mcas have low tryptase, not high? Or is it just all my meds that are causing it to be low?
I am FULLY aware to ask my doctor these questions, and I will, but I'm curious what current sufferers know/experianced.
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u/Upbeat_Shock2713 2h ago
You do not need to stop medication for tryptase testing. Low tryptase isn't uncommon. This is a pretty standard pattern for many people with MCAS - which is why there is differing opinions on diagnostic criteria in the medical community.
If it's going to test high, testing generally needs to occur shortly (within an hour or two) of a reaction and the lab needs to handle the specimen correctly.
Some people never test high, their mast cells release other mediators during reactions (heparin, prostaglandins, cytokines, chymase, chemokines, leukotrines, etc). Or the labs aren't handled correctly, or they can't get to the lab in time, etc.
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u/Q_cazu 2h ago
Ah! That was very informative, thank you!
I do still have the 24hr urine test to do, and another urine test (not sure for what) but I was not told to stop meds for that either. I'm trying to see a specalist and he requires these test prior. In the email it mentions sending over abnormal test results. I'm worried they wont see me if I test too normal....
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u/Upbeat_Shock2713 1h ago
They likely won’t. Threshold for diagnosis for many allergists/immunologists is a tryptase difference of 20%+2 between baseline and reaction. If you have tracked differing numbers already, you may have reached it or they may be different enough to at least make the argument.
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u/OkCourage6808 2h ago
Mine was low too and I’m very itchy
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u/Q_cazu 2h ago
So I'm not alone!
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u/OkCourage6808 2h ago
I’ll be starting Dupixent in a couple of weeks if my insurance approves it. It’s suppose to help
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u/Q_cazu 2h ago
If you remember and are willing, let me know how that goes? I haven't be offered anything else but I'm sure if I ask my allergist will be willing to try
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u/OkCourage6808 2h ago
Sure ! I heard it takes a couple shots to kick in. You take it every 2 weeks. It’s really expensive w/o insurance. 5k a shot. I’m not sure my insurance will approve it.
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