Hi, everyone.
To be honest, I am not 100% sure if I have systemic mastocytosis, but I think I might. I will share my story and then I have a few questions that I'd really, really appreciate if someone could answer because I cannot find the answers anywhere else.
My worst symptoms are:
-facial flushing, which I've actually had since I was in the first grade.
-a few food allergies
-a very finicky thyroid, which works fine sometimes and then other times will not. Example: when I went 100% gluten free, my thyroid started working perfectly. When I went on birth control (for endometriosis), my thyroid is back to not being so happy.
-pancytopenia (low level blood counts. I've had a low white blood cell count and neutropenia since I was like 12 years old. Off and on, I have anemia as well as low platelets). No ONE has been able to figure out the cause for this. NO ONE. Not even Johns Hopkins. I've had this blood problem for over 16+ years!
-chronically low blood pressure, which I take fludrocortisone to try to raise, but it doesn't really help much.
-chronic tachycardia (racing pulse), which I've had since I was about 12 as well.
-allergic to CT scan dyes - causes me to break out in hives.
In 2003-2004ish something that looked like a mole on my back started itching and bleeding, so a dermatologist biopsied it and it came back as mastocytosis. She never told me anything about systemic mastocytosis. The only thing she told me was to stay away from morphine as it could cause an allergic reaction.
Fast forward to 2007, when I became extremely ill with an extreme amount of symptoms. I have been diagnosed with so many different things. The big one being lyme disease, though I've never had a fully positive test, though treatment for it did seem to help some. Going gluten free helped my symptoms a TON. Then I also found out I have Pernicious Anemia. When I found out I had that I was hopeful it would help my pancytopenia because it can be a cause of that. Well, that never helped, which was very saddening for me.
I should also mention I've had two bone marrow biopsies done because of my blood issues. One in 2008 and then another in 2010. Both were normal with the exception of being hypocellular. Of course, none were checked for systemic mastocytosis, I'm pretty sure.
Last week I saw an immunologist and told him these things (he was not a masto specialist) and he tested my histamine and tryptaste blood levels which turned out to be normal. And I had a urine histamine test but haven't gotten those results back yet. He told me since my tryptase levels were normal, then I don't have mastocytosis. Is this ALWAYS true?
I have an appointment in the beginning of August with a masto specialist. I don't want to have another bone marrow biopsy done and I am hoping that somehow we can get my bone marrow slide from 2010 and maybe test for mastocytosis that way?
So my questions are:
1. Do you always have a high tryptase level with systemic mastocytosis?
2. Does anyone else have pancytopenia or blood levels affected with systemic mastocytosis? From what I've read, it's not a good outlook for those with hematological disorders and mastocytosis?
3. Does this sound like it could be systemic mastocytosis? With my being diagnosed with cutaneous mastocytosis in 2003-2004, I thought this could be a definite culprit for all of my problems now, though I am not really sure.
Thanks, everyone.