Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> Low tryptase level. Now what? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1297746816 Message started by ryleep2002 on 02/14/11 at 17:13:36

Title: Low tryptase level. Now what?
Post by ryleep2002 on 02/14/11 at 17:13:36

I am still in the diagnosis phase of my journey but it was thought that I had systemic mastocytosis based on my episodes i've had over the past couple years. I finally just got my tryptase results from my blood work back in December. This was a baseline reading. I was told that normal levels are 3.8 to 11.4. My reading came back as 2.1. I spent so much time researching about high tryptase levels and didn't spend any time on low ones. What could cause a low level and what does this mean in terms of my potential diagnosis. The blood test was done while not having an episode. I just got the new blood work done last week during an episode and now have to wait for those results.

Title: Re: Low tryptase level. Now what?
Post by Lisa on 02/14/11 at 23:22:37

Don't worry about the low tryptase! This does not throw out the diagnosis of a mast cell disorder!! The high tryptase predominantly lies with those patients who have the clonal form of mastocytosis, that of what they call systemic mastocytosis. However, it is now recognized that the low tryptase doesn't throw out the other forms of masto. Mine, when we last measured it 3 years ago it was only 4. It's virtually impossible for me to test my tryptase due to how difficult it is to find the exam, but my doctors have learned that depending on the form of the disease, a low tryptase is part of that form's profile.

This is what makes diagnosis of a mast cell disorder so challenging - what they thought diagnosed us they've since come to realize only will diagnose only one form of it. And those tests they've found diagnoses that one form, that of SM, may not diagnose the other form, that of the nonclonal MCAD. It's pretty complicated, but as long as your doctors know that the low tryptase won't throw out the diagnosis, this helps a lot.

There should be published soon a new report of the diagnostic parameters for the non-clonal MCAD form of mast cell disorders and your doctors will be able to use that to help figure out your disease.

If you are wanting an article that is a proposal for these parameters I'll be happy to send it to you. Just send me a PM with your email and I'll send you the report.

Lisa

Title: Re: Low tryptase level. Now what?
Post by Kim on 02/15/11 at 16:46:46

Lisa;

Sorry to jump in on someone else's posts... but i would love to have these perimeters to show Brie's Dr.

Thanks, Kim

Title: Re: Low tryptase level. Now what?
Post by Lisa on 02/16/11 at 09:02:54

I believe I've sent them to you already Kim, but I'll resend them.

As to the New parameters from the WHO consensus on MCAD last September, these have not yet been published. We are all anxiously awaiting the publication of this document! When they are available, believe me, they'll spread like wildfire!