I just found out from my health care provider's nurse that my tryptase levels were high at 31.6 based on a blood test. The nurse had called to set an appointment with my doctor to review these results, but am unable to see her for another 3 weeks. Meanwhile, from what I've been able to find on the internet, I've become worried. Are there other less scarey things out there that involve high tryptase levels?
I've do not have any skin involvement. I've had many episodes throughout my life that results in emergency room visits due to these allergy "attacks." First severe cramping, then diahrea, itching, hives. I have become very intuned to the precipitating symptoms to these attacks and have been quite successful at abating a hospital visit by taking oral liquid allergy medicine. Either way, I am wiped out for the following 3 days with a marked mood change.
I also have a history of low blood pressure, fainting spells, palpitations as well as upper GI issues. 9 years ago my doctor mentioned the suspicion of mastocytosis, but all lab work came back normal. Should mastocytosis still be considered after all this time?
Mastocytosis is a group of rare disorders of both children and adults caused by the presence of too many mast cells (mastocytes) and CD34+ mast cell precursors in a person's body.Mast cells are located in connective tissue, including the skin, the linings of the stomach and intestine, and other sites. They play an important role in helping defend these tissues from disease. By releasing chemical "alarms" such as histamine, mast cells attract other key players of the immune defense system to areas of the body where they are needed.
In some rare cases chemicals released by mast cells cause changes in the immune system leading to typical allergy symptoms such as:
Anaphylaxis (shock from allergic or immune causes)
When too many mast cells exist in a person's body, the additional chemicals can cause:
Episodes of very low blood pressure (including shock) and faintness
Bone or muscle pain
Nausea and vomiting .
Considering your symptoms your profile closely resembles mastocytosis.
What can I do/say to my doctor to test me for Mastocytosis?
I've had "allergic reactions" for the past few months now and I've been eliminating them as they arise. However, I just had my blood work come back to show that it's all negative! However, I still have anaphylaxis at times, muscle pain (esp in my back), hives, and my hands and feet will periodically go numb.
Where do I go from here? My allergist essentially told me that he thought I was making it all up (even though I've been to the hospital and had to have shots of Epinephrine, and been on Pretnizone).
I would get copies of your chart and go get a second opinion! Your doc doesn't believe you? Find another doctor.
My old allergist thought my asthma and allergy last year was anxiety. He sent his nurse in to set me straight and she suggested that I allow my self to just pass out from not breathing and after a minutes I'd just wake up and lean it was all made up. Imagine if I did that?
I went to more doctors after that and one doc saw proof if swelling and made me feel better knowing it was not anxiety. I should not have needed proof. What I am getting at is if you don't get the treatment you think you should be getting get a second, third, fourth opinion. If everyone says the same thing then you may want to consider listening. That was the only doc that thought it was anxiety. All the other doctors knew it was allergy but were unable to medicate me because my allergies were too severe. Allergy shots were the only thing that stopped it. But never stay with your doctor if you are not getting proper treatment.
I think my Tryp test was around 300 if I am right. It said tryp levels but I'm not sure I read it correctly. But I think that goes way up when I'm stung by a wasp since all sorts of things go systemic after that. Never hurts for a second opinion and more testing.
I was fortunate enough to have a dr diagnose me early then order a bone marrow test. I have found certain food allergies that are trigers==fish, peanut butter ( which might mean nuts in general) and strawberries. I discovered these on my own. Any suggestions of extra allergies? How can I bring my trptase levels down?
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