Mast Cell Disease vs Carcinoid

Posted by megansims @megansims, Aug 4, 2019

I have recently started on the challenging road of finding a diagnosis for my flushing/diarrhea/dizziness/headaches/tachycardia/palpitations/etc. Some of the Biomarkers came back positive for Carcinoid (NET) but I am still suspicious of MCAS or Mastocytosis. My Chromogranin A was high and my urine 5-HIAA was high, my tryptase was normal, but never checked after an episode. Does anyone else have experience with getting full workup for Carcinoid with no evidence of a tumor, and then finding out that that have a Mast Cell disorder? There are just SO MANY parallels. Thanks!

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Justin McClanahan, Moderator | @JustinMcClanahan | Aug 6, 2019

Hello @megansims. I see that you have also found some of the NET discussions, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/. Here is another discussion that you may find interesting in Blood Cancers & Disorders titled, "Mast Cell Activation," https://connect.mayoclinic.org/discussion/mast-cell-activation/. The discussion has many posts, but you may find some of the posts in that discussion relevant and similar to your own.

@megansims, has your provider mentioned anything about mast cell disorder, or are you just wondering from other members if there is any validity to your own concerns? Have you discussed this potential diagnosis with your provider or asked for a second opinion?

megansims | @megansims | Aug 8, 2019

In reply to @JustinMcClanahan "Hello @megansims. I see that you have also found some of the NET discussions, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/. Here..." + (show)

Thanks @JustinMcClanahan . I spoke with A NET specialist on the phone and he was wondering if I had had the testing to rule it out. Right now, the biomarkers are more pointing at a NET, but because nothing is showing up on scans, he wanted to make sure that it had been ruled out! I am in the process of getting an appointment at Mayo, right now, my Endocrinologist at the U of MN is not doing much of anything!

pamandrewsrn | @pamandrewsrn | Oct 24, 2020

I see this was posted in 2019. Have you had a diagnosis and treatment since then?

Amanda Roe | @amandajro | Oct 24, 2020

Hello and welcome to Mayo Clinic Connect @pamandrewsrn. I see you are curious about the diagnosis and treatment outcome for @megansims so have mentioned her here in hopes that the pair of you can connect.

If you feel comfortable sharing, what is your background with mast cell disease/carcinoid?