Interpreting Laboratory Results

Interpreting tryptase:

Your "baseline" tryptase is what counts here. This means your lowest reading when you were not experiencing symptoms....but it can take up to a couple weeks for tryptase to return to normal after a reaction, so it may be important to test this several times.

Under 11.5: in reference range, most typical of MCAS, seen in some cases of ISM

Between 11.5 and 20: slight elevation, common with MCAS and some cases of ISM. These levels do not meet any criteria for (any) SM diagnosis.

Between 20 and 30: Some practitioners perform a bone marrow biopsy to screen for ISM, for which this satisfies one minor criterion. Others monitor levels with regular testing. Testing for HATS and possible screening for other conditions may also be warranted.

30-500+: A bone marrow biopsy is typically (but not always in this lower range) recommended to screen for SM, for which this satisfies one minor criterion. Additionally, baseline tryptase over 200 satisfies one possible minor criterion for SSM after general SM diagnostic criteria have been met. Testing for HATS and basic screening for other conditions is also warranted.

If your baseline tryptase is significantly high, you might also test for a mutation in the KIT D816V gene, since this could satisfy an additional minor criterion for SM and could be relevant to some fourth line therapies. You can test this in peripheral blood or bone marrow.

Interpreting Mediator Tests:

If one or more mast cell mediators come back elevated, that's great news and should be a help to your provider in confirming an MCAS diagnosis.

I wish this weren't the case, but completely unremarkable mediator tests (all normal ranges) are also extremely common among patients who later do receive laboratory confirmation of elevated mediator release, as well as by those who improve on treatment but either never receive this or do not continue to pursue it, even when these samples are collected and processed perfectly. So negative results here don't really mean anything.

Notes on (some) other results/relevant investigations:

If calcium is higher than 10 mg/dL in an adult patient, ask for

PTH (parathyroid)

if normal, followed by, in 24 hour urine, 5-HIAA and calcium

If total IgE is elevated

in the hundreds, ask for a complete autoimmune panel (blood), and perhaps a more comprehensive IgE blood testing

particularly in the thousands, it's time to investigate chronic infections or possible implant rejection (both of which are also common triggers for mast cell dysfunction)

If specific IgE is elevated, that's a confirmed allergen which should be avoided. If you're still experiencing symptoms after cutting the allergen or there are other reasons to suspect the presence of a mast cell disorder, you should continue to refuse any kind of skin or injectable testing or allergy treatments (shots, various low dose therapies, challenges, and so on).

Thyroid, hormone, clotting, or endocrine issues may arise from conditions which commonly trigger or worsen a mast cell disorder, may mimic a mast cell disorder but be unrelated, or may arise as a result of a mast cell disorder. These warrant individual investigation if they fail to resolve with appropriate mast cell treatment or indicate the presence of an unrelated condition.