Tryptase came back high. Waiting on Prostaglandins still. Allergist referring me to hematologist - any advice?

I was under the impression my allergist office was able to help me manage any disease related to mast cells. I got a call on Tuesday informing me they are referring me to a hematologist at the nearby research hospital. They said they “suspect mastocytosis” based on my baseline blood and urine results and would be better served by a hematologist.

I’ll still see my allergist at the end of December. However, I have a lot of anxiety jumping up yet another doctor - especially a specialist in a specialty I’ve never had to engage with before.

Anyone here manage their mast cell disease with a hematologist? Wondering what I’m in for. I’m concerned because antihistamines help, they aren’t preventing or lessening the intensity of anaphylactic symptoms anymore (BP very unstable, tachycardia, light headed, brain fog, can’t focus, exhausted, presyncope symptoms). It helps with skin issues but that’s it.

My tryptase baseline (with taking antihistamines, btw) was 12.1. I did not have a reaction the same day I had labs drawn.

Histamine normal. C4C on the low side but still normal range. C1 normal. 5-HIAA normal. Waiting on PG F2 alpha still.

Also, just discovered my maternal grandmothers sister, my great aunt, had AML 15ish years ago. I didn’t realize that’s the cancer she had. I’m wondering if there’s some weird genetic component going on…

Posted Dec 1, 2023, 11:34 PM UTC

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