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I just got my blood work back for my Tryptase and it is a 4.2
I know Dr Hamilton said if it doesnt come back high, or positive that I still may have mast cell. I brought my urine in this morning from my 24 hour test and I wont here back from that for another week or so.
Jenny
Tryptase
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Joe,
The reference range says 0.0-11.4 (I can log onto a website that shows all of my test results, I have been ck-ing it constantly so I haven't spoken to my Dr. yet...)
I have read that a tryptase should only be taken 2-4 hours after a reaction. But I really don't know. I joined a mast cell forum and posted there as well. I think it's still pretty common to have a low level but still have mast cell disorder. I guess I will wait to see what Dr. Hamilton says and wait on my urine results.
Jenny
The reference range says 0.0-11.4 (I can log onto a website that shows all of my test results, I have been ck-ing it constantly so I haven't spoken to my Dr. yet...)
I have read that a tryptase should only be taken 2-4 hours after a reaction. But I really don't know. I joined a mast cell forum and posted there as well. I think it's still pretty common to have a low level but still have mast cell disorder. I guess I will wait to see what Dr. Hamilton says and wait on my urine results.
Jenny
Jenny,
You are right about having to test 2-4 hours after a reaction, otherwise the test results could be normal. This was my experience. Your urine test may yield a normal result as well. Doctors who treat mast cell disorders are aware of this.
Mary Beth
You are right about having to test 2-4 hours after a reaction, otherwise the test results could be normal. This was my experience. Your urine test may yield a normal result as well. Doctors who treat mast cell disorders are aware of this.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
The World Health Organization's diagnostic criteria for systemic mastocytosis includes:
For those with MCAS (mast cell activation syndrome) tryptase is typically within normal limits. Having said that, it's important for any mast cell patient to have a baseline tryptase. Like any medical condition, MCAS may evolve over time, so it's always wise to have that baseline to refer back to if necessary.
Julie
Serum total tryptase level persistently greater than 20 ng/mL
For those with MCAS (mast cell activation syndrome) tryptase is typically within normal limits. Having said that, it's important for any mast cell patient to have a baseline tryptase. Like any medical condition, MCAS may evolve over time, so it's always wise to have that baseline to refer back to if necessary.
Julie
Joe,
I had a colonoscopy/endoscopy January 2010 and that doctor turned out to be a real a-hole. (shocker). And I don't think he even checked for mast cells. I called the office a few weeks ago to locate my slides and they gave me the run around. When I speak to Dr. Hamilton about my results soon, I will bring up if he would like to stain my biopsies from that visit. If that's even still possible?
Jenny
I had a colonoscopy/endoscopy January 2010 and that doctor turned out to be a real a-hole. (shocker). And I don't think he even checked for mast cells. I called the office a few weeks ago to locate my slides and they gave me the run around. When I speak to Dr. Hamilton about my results soon, I will bring up if he would like to stain my biopsies from that visit. If that's even still possible?
Jenny
Jenny,
You should be able to track down your biopsy slides and have them retested. After I was diagnosed with mastocytic enterocolitis I went up to Hopkins for a consult. (I'm in the DC area.) The allergist at Hopkins insisted that the specimen be retested at their lab. It took a little "leg work" but I was able to get them and send them up to Hopkins. Same results, but twice tested!
Regarding the tryptase question, it is possible that you could have SM with the lower tryptase, but I've been told repeatedly by the mast cell specialist I saw that it is highly unlikely. Having said that the science behind understanding mast cell activity is evolving, so IMO nothing is written in stone when it comes to this issue.
Julie
You should be able to track down your biopsy slides and have them retested. After I was diagnosed with mastocytic enterocolitis I went up to Hopkins for a consult. (I'm in the DC area.) The allergist at Hopkins insisted that the specimen be retested at their lab. It took a little "leg work" but I was able to get them and send them up to Hopkins. Same results, but twice tested!
Regarding the tryptase question, it is possible that you could have SM with the lower tryptase, but I've been told repeatedly by the mast cell specialist I saw that it is highly unlikely. Having said that the science behind understanding mast cell activity is evolving, so IMO nothing is written in stone when it comes to this issue.
Julie
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Joefnh
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Jenny I also had my original slides re-tested in 2010 but that was looking just for MC.
I'm not sure about taking an already mounted biopsy sample and re-staining them. When they mount a biopsy onto a glass microscope slide, it is stained for that particular test and then a small thin glass cover is glued onto the larger microscope slide preserving and protecting the biopsy sample. To re-stain it would take a bit of work that might damage the sample.
I'm not sure about taking an already mounted biopsy sample and re-staining them. When they mount a biopsy onto a glass microscope slide, it is stained for that particular test and then a small thin glass cover is glued onto the larger microscope slide preserving and protecting the biopsy sample. To re-stain it would take a bit of work that might damage the sample.
Joe