Okay, here's a run down of my appointment with Dr. Afrin.  Please remember that anything that I write is MY INTERPRETATION of what Dr. Afrin said.  It's always possible that what I "heard" isn't what he said, but I thought I'd share what I got out of the appointment, as he was willing to answer my questions at the end.

First he took a long history, starting back in my childhood and asking about each incident that I had in the progression of my illness.  I had lots of things that I wasn't sure could be attributed to mast cell, but by his reaction a lot of it could.  He suspected my dry eyes, which my ophthalmologist thinks is auto-immune, is mast cell related. He asked if I ever get rashes and I showed him my torso, which is often a mottled red from heat or pressure from clothing (I've previously just considered this a part of being very fair skinned), and his reaction was "enough said" and put me down for a yes.

He then did a physical exam and when he did the scratch test on my back, it started itching and burning so much I was squirming from the reaction.  My husband said each time he went back and checked it, it was clearly visible (I think he wrote MC+ on my back!).  I don't know if he got anything else from the physical exam.  

He then said that he strongly suspects that I have MCAS, but that in order to give a diagnosis you need three things to support it: 1) medical history/physical exam, which I clearly have (including having already ruled out just about everything else), 2) improvement with appropriate treatment (I've seen good, but not at all full, improvement with H1s and H2s), and 3) labs showing abnormal mast cell activity.

So, of course, he ordered TONS of labs, which was in part why I was there, to get them all done, and hopefully done right.  I didn't actually get a list of all of the labs he ordered (I usually like to do that), but I know from other people's experience I'll be waiting for weeks, so I'll just have to be patient.

I also let them draw a couple of extra vials for a study he's doing, funded by The Mastocytosis Society, to see if MCAS patients have specific "signals" that cause increased amounts of monocytes and reactive lymphocytes in the blood.

At the end of my time with Dr. Afrin, he was kind enough to let me ask a bunch of questions.  Now, I'm going to paraphrase a lot here, but when it came to questions in terms of "can/why does MCAS cause my fatigue, low blood pressure, Hashimoto's, etc...", his basic answer was similar to his discussion at the end of his Toronto lecture slides: There are so many possible mast cell mutations, and so many (hundreds and hundreds) of mast cell mediators, each of which can impact multiple other systems, that it's impossible to say exactly how the mast cell activation is causing all of this.  I think he did consider the fatigue and poor recovery from exertion, as well as the low blood pressure and general dizziness to be attributable to MCAS, but there's nothing definitive to explain why.

I asked if I should be concerned that my symptoms seem to be continuing to get worse, and he said that there's no strict pattern to how these things work, but he did say that often something traumatic will cause a worsening, and you may or may not go back to your old baseline.  (I'm not sure I've put this right, but that's sort of how I understood it.)

I asked what the gas and bloating I experience is caused by and he again said there's so much going on in there, it's hard to say exactly.  I asked if my huge bloating was likely just from gas, or also swelling/water retention and he said it was likely a combination of both.  

I asked about the fact that Dr. Castell's is now doing PGF2 alpha instead of PGD2 and he said that he doesn't know why she is (and will ask her about it at the annual meeting in October), but that he thinks they're equally valid since PGF2 is made from PGD2, so an elevation of either would show mast cell activity.  He said it could be that they have a lab that is able to do it for them more easily or in a more cost effective manner.

I asked about taking ranitidine an hour after taking my Synthroid and if it would interfere with Synthroid absorption, and he didn't think this would be a problem.

I asked if I have any likelihood of having anaphalactic episodes like some of you folks do and whether I should get Epi-pens.  He said it was hard to say since, as we well know, every MCAS patient is different, and that he wouldn't recommend them without a diagnosis.  I described a couple of episodes that I've had getting into hot cars and he said those definitely sounded anaphalactic, and that I should probably have Epi-pens.  He also cautioned me that if I ever do have to use one, that even if I'm somewhere in public, I MUST lie down first, because I could fall down after using one.  I thought this was kind of funny, because if I'm feeling bad enough to actually use one, I'm already going to be laying down!

Great!  Thanks for sharing.  Will they be sending you your labs like they did for me?  Then you will be able to see the elevated or out of range items.

I was never even told of a MyChart system, unless it is something new.  I'll ask. I'm returning on July 9th.