Hi Kat,

Welcome to the group!

The first thing I would recommend is that you ask a doctor... even your GP is fine... for a baseline tryptase.  That's a blood test that you can do anytime.  If that comes back elevated the next step is to be evaluated for systemic mastocytosis.  Some people with SM have no "spots"... or very mild symptoms... some don't even need to take medication on a daily basis.  NOBODY can tell by symptoms alone whether your tryptase is elevated or not, so don't be afraid to ask for the test and don't let your doctor blow you off.

If your tryptase is not elevated, then here's what you need to think about: how much are your symptoms bothering you?  I fought hard for a diagnosis because I was going through anaphylaxis once a month.  Looking back I think I've had a mast cell disorder for a long time, but it wasn't disrupting my life... I didn't have to take any medications, avoid certain foods, or do anything special.  99% of the time I felt absolutely fine (or at least "normal for me").  That changed in 2008 after the birth of my last child as well as a prolonged period of severe stress.  Now I'm at the point where if I didn't take medication on a daily basis I would be disabled.  

Only you know how much your symptoms are bothering you.  Your case doesn't need to be extreme for you to seek a diagnosis.  But... since I know from first-hand experience how difficult it is when you know you have a problem, but your tests keep coming back normal, normal, normal... I would think twice about doing it unless you have to.  IMO, if the only thing you have to do to ease your symptoms is stay out of the sun... well that's not so bad!  You can control that.  You could also experiment with antihistamines... H1s (Benadryl, Zyrtec, Claritin, Allegra) for itching, H2s (Zantac, Pepcid) for GI symptoms.  If those really help, then you might want to think again about exploring a mast cell diagnosis.

I hope this is helpful to you!  Hashimoto's is common in people with chronic urticaria (chronic hives), so it definitely is possible that you have some kind of mast cell disorder.

Heather

Thanks, Heather and Nancy, for your thoughts.

I guess my main question is, should I go to a allergist for the tryptase test, and are they likely to be willing to do it?  It's just about impossible for me to get an appt. with my GP (it usually takes 2-3 months to get an appt., and his staff are horrible, so I would rather not go there).  Also, he's still convinced that I have some sort of parasitic infection like Lyme/bartonella/babesiosis and heavy metals (despite all neg testing for these), so I'm not sure how open he'll be to this line of testing.  

I have tried taking my husband's Loratadine for a few days and it doesn't seem to have made any difference, but then, from what most ppl on here are taking, it might not be enough to do anything.

Heather:  As for how much my symptoms are bothering me, well, some I just chalk up to the fibromyalgia and hypothyroidism, but if there's a chance I could find something to help with the low BP, the abdominal bloating/cramping/gas, and the horrible prickling/itching (I can barely take a tepid shower), then I'm willing to pursue it!!  I've been disabled for 7 years now, and while I've slowly managed to improve some of my symptoms, new ones continue to crop up, and I can't seem to get to a functional level.  Every little improvement I can find helps, both in body and spirit.

Your opinions are greatly appreciated!

 -Kat

Hey all,  I went to the allergist today and just thought I'd let you know how it went.  I saw Dr. Gloria Akan with ENTAA Care.  I mention this because I was seriously impressed with her.  I've seen a lot of doctors, and rarely do I find ones who are personable, concerned, knowledgeable, thorough, willing to answer questions and happy to explain technical details, all in one package!!  (Dr. Marcus, an ENT with the same practice, is also fantastic to deal with.)

Her thoughts were about the same as mine:  I definitely have cholinergic urticaria (heat triggered itching).  It is possible that I have a Mast Cell Disorder.

She ordered bloodwork (Tryptase, ANA with Reflex (which is always positive), Complement C4, Complement CH50, ESR).  I already had recent CBC, CMP, TSH and T4free.

She prescribed Ranitidine 150mg and Zyrtec 10mg once a day each.

I'm supposed to go back in three weeks and she said if it does seem MC related, she'd send me to Dr. Metcalf at NIH (she knew him and recommended him highly).

Thanks for your thoughts on this....it made me feel confident going into the appointment, though she was so great, it went very smoothly.  You just never know what sort of doctor you're going to get.  Having read up in the forum also helped, as it was much easier to understand what she was telling me.

Thanks to you all!