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tryptase labs

Posted by mama.aloha @mamaaloha, Sep 14 11:42pm

Hi all, does anyone have any information on the tryptase labs that assess mast cell activation? Is this number relatively stable, or is it labile depending on your current condition?

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emo | @emo | Sep 15 10:53am

I have some experience with it. What do you mean by “relatively stable”?

It’s my understanding that one reason MCAS is difficult to diagnose is because tryptase labs may appear normal unless you have them done while you’re having a flare. Unless the symptoms are very, very severe, it can be hard to capture this in the labs. So while it’s good to test, some providers use “empiric treatment” (basically trial and error) and if they suspect MCAS, and honestly you could even do this on your own because most of the medications are over the counter, they may have you try certain antihistamines regularly/preventatively to see if symptoms improve (and that’s what was implied by a Mayo Clinic provider) because it’s relatively low-risk to try.

I have POTS and HSD/hEDS, and MCAS is often part of it, so much so people call it “the trio.” The trouble is people can have milder symptoms of mast cell activation, so maybe the symptoms are still very limiting but not to the point of needing an epi pen, but that seems to be a very gray area and not much clarity or research. Feels like one of those situations where the labs tell only part of the story.

If you can and you suspect it, it’s probably best to see an allergist with experience with MCAS.

“A blood test to evaluate tryptase levels is often performed, particularly as it is a strong marker for mastocytosis and for HATs, but it is considered less specific for MCAS as many people affected by MCAS do not have high baseline tryptase levels. This means that their normal, everyday tryptase levels are not high. They may however be higher during a symptom flare or during anaphylaxis, but it can be challenging to obtain blood samples at this precise time for testing.”

You may have come across this, but this may help: https://www.mastcellaction.org/about-mcas#:~:text=Due%20to%20the%20allergic%2Dtype,blood%20sample%20for%20RAST%20testing.

REPLY
1 reply
mama.aloha | @mamaaloha | Sep 15 8:40pm
In reply to @emo "I have some experience with it. What do you mean by “relatively stable”? It’s my understanding..." + (show)
@emo

I have some experience with it. What do you mean by “relatively stable”?

It’s my understanding that one reason MCAS is difficult to diagnose is because tryptase labs may appear normal unless you have them done while you’re having a flare. Unless the symptoms are very, very severe, it can be hard to capture this in the labs. So while it’s good to test, some providers use “empiric treatment” (basically trial and error) and if they suspect MCAS, and honestly you could even do this on your own because most of the medications are over the counter, they may have you try certain antihistamines regularly/preventatively to see if symptoms improve (and that’s what was implied by a Mayo Clinic provider) because it’s relatively low-risk to try.

I have POTS and HSD/hEDS, and MCAS is often part of it, so much so people call it “the trio.” The trouble is people can have milder symptoms of mast cell activation, so maybe the symptoms are still very limiting but not to the point of needing an epi pen, but that seems to be a very gray area and not much clarity or research. Feels like one of those situations where the labs tell only part of the story.

If you can and you suspect it, it’s probably best to see an allergist with experience with MCAS.

“A blood test to evaluate tryptase levels is often performed, particularly as it is a strong marker for mastocytosis and for HATs, but it is considered less specific for MCAS as many people affected by MCAS do not have high baseline tryptase levels. This means that their normal, everyday tryptase levels are not high. They may however be higher during a symptom flare or during anaphylaxis, but it can be challenging to obtain blood samples at this precise time for testing.”

You may have come across this, but this may help: https://www.mastcellaction.org/about-mcas#:~:text=Due%20to%20the%20allergic%2Dtype,blood%20sample%20for%20RAST%20testing.

Jump to this post

That is so helpful, thank you.
The MD was feeling pretty certain about MCAS, but I was puzzled about the normal tryptase lab values. I'm also on a super high dose of antihistamines, and it sounds like that could also affect the tryptase levels?
Thank you so much.

REPLY
1 reply
emo | @emo | Sep 16 12:06am
In reply to @mamaaloha "That is so helpful, thank you. The MD was feeling pretty certain about MCAS, but I..." + (show)
@mamaaloha

That is so helpful, thank you.
The MD was feeling pretty certain about MCAS, but I was puzzled about the normal tryptase lab values. I'm also on a super high dose of antihistamines, and it sounds like that could also affect the tryptase levels?
Thank you so much.

Jump to this post

Glad it was helpful, and I’m glad it sounds like you have a doctor who’s aware of more of the nuance with MCAS. That’s very difficult to find >_< .

Since antihistamines are treatment for MCAS, it would make sense that taking them would affect your tryptase levels, but I don’t know for sure. If I have mast cell activation, it would be mild, relative to my other symptoms with these crazy conditions, so I actually haven’t had a chance to pursue it with an allergist.

I hope you’re feeling better though!

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