Craig Posted July 12, 2017 Report Share Posted July 12, 2017 Hi all. I am a POTS/EDS patient who suffers from a number of allergies (possible MCAS). I recently encountered the study released late 2016 regarding how multiple copies of the alpha-tryptase gene resulted in high levels of serum tryptase, and how this was heavily associated with families of those with POTS/EDS/MCAS. Therefore, I decided to get my tryptase level tested, paying privately for it. From the study, it would appear that levels higher than 10 ng/ml are pretty conclusive for "hereditary alpha-tryptasemia"; my level was 11.5 ng/ml. What am I to make of this? I have searched online for potential treatments and have been found wanting. Can anything be done to at least reduce the tryptase? I'm almost 29, been sick for the last 16 years, and desperately want to get better as I cannot take this anymore - it has ruined my life! Any help would be very much appreciated. Thanks, Craig. P.S. I thought it might be interesting to add a poll to see how many of us have high tryptase levels. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted July 13, 2017 Report Share Posted July 13, 2017 Hi Craig! Welcome to the forum! Here you will find a whole host of people that will, hopefully, be able to help you find information you are looking for! My daughter has, what I would say, mild MCAS. She has EDS/POTS/MCAS and her tryptase levels at age 12 were 17. At age 17, they were tested again and were still about 15, I think. At that point they did a bone marrow biopsy to check for mastocytosis, but, hurray, it came back with no extra mast cells in her bone marrow. They did conclude, that her mast cells were just a bit overactive. She takes a combination of Benadryl and Zantac to hopefully keep it in check, but, after some blood work (still on her meds) her tryptase came back at 11. So, it's down, just not gone. There is a paper put out by Dr. Afrin that is great! If you search through the old posts, there should be one by Katybug and there is most likely a link to his paper. She has real trouble with MCAS. Even though my daughter's MCAS isn't her main concern, she does have a whole host of other neurological symptoms and will be facing spinal fusion surgery in a couple of weeks. Hope you find some answers here! Quote Link to comment Share on other sites More sharing options...
angelloz Posted July 14, 2017 Report Share Posted July 14, 2017 Hello, I am very interested in your results. When I was searching for answers an elevated tryptase was discovered. I too had a bone marrow biopsy that was negative. I have been diagnosed with hypovolemic dysautonomia and MCAD although I don't have allergies, more medication sensitivity and antihistamines do not help me. I have never been diagnosed with EDS. My tryptase has ranged from 11 to 17.5. Quote Link to comment Share on other sites More sharing options...
Craig Posted July 14, 2017 Author Report Share Posted July 14, 2017 Thank you for the replies so far, and very interesting to see all 3 responses to the poll showed a high tryptase level. As we all know, these conditions are very complex so I have my doubts whether alpha-tryptase is the "be-all and end-all", but I do believe it could well be a key piece of the puzzle. Either way, it will be interesting if we can get some more people taking part in the poll. DizzyGirls, I am so sorry to hear of your daughter's current predicament. For what its worth, I hope she gets through her spinal fusion as well as she possibly can and that it has the desired effects you are hoping for. I also appreciate you mentioning the paper by Dr. Afrin - I'll check it out when I can angelloz, if you don't mind me asking, how did you get the diagnosis of "hypovolemic" dysautonomia? I ask as I am fairly sure I have this form of POTS/dysautonomia myself, but was not aware of any specific testing that could deduce this. Could you offer any advice? Quote Link to comment Share on other sites More sharing options...
angelloz Posted July 15, 2017 Report Share Posted July 15, 2017 Craig, I had hemodynamic testing done at the Cleveland Clinic. ( This is a blood volume test ). I have actually had it done twice. First time showed mildly reduced blood volume, the second time it was moderately reduced. It is a long test and they take your blood every 15 to 30 minutes I cannot remember exactly as it was awhile back. I think as someone else mentioned , while some doctors give pots varieties certain labels, Vanderbilt just considers it different presentations of the same thing. Quote Link to comment Share on other sites More sharing options...
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