I am anxiously awaiting my appointment with Dr. Afrin coming up soon.  I am feeling pretty bad lately so it can't come soon enough.  I had a few questions I was wondering if any of you could answer in the meantime?   To give a little context to my questions, I have Hyper POTS and EDS.  My heart rate variability lately is awful.  Sometimes I'm at 40 bpm and can barely function and 2 minutes later when I'm standing and getting my kids ready for school I'm at 150bpm.  I'm using all of my POTS tips and nothing is working.  I'm not even on a bblocker anymore.

1) Could I possibly have Hashimotos if my TSH, T4 and T3 are normal? It seems that a lot of you have thyroid issues/Hashi's...what is the connection to MCAD?   I have a lot of thyroid symptoms above and beyond the POTS stuff.

I'm getting hives lately...just a few here and there but hives are new for me.  I saw a dermatologist last week.  She said I didn't have any seen of masto on my skin.  She said I have dermatographia but before I left she looked again at the scratch and changed her mind.  She said I COULD have a mast cell problem and just gave me a list of meds to avoid and that was it. She was not helpful.  

2) I am taking Allegra 180 mg and Zantac 150mg first thing every morning and a Benadryl at night if I feel wired or twitchy.  Still my stomach erupts into tidal waves almost every morning before I even eat anything and my heart rate is so variable.  Do a lot of you feel especially bad in the morning?

3) My GI doctor dismissed my concerns about masto because 1) I don't flush 2) I am chronically constipated and 3) my "biopsies looked great".  I got the pathology report..there was no mention of special staining for mast cells.  I don't agree with her that these things preclude me from a mast cell problem.  Is my thinking correct?

Thanks!

I'm new here too so I can't answer your questions.  

I can't claim to know much of anything.  But I wanted to respond to what you wrote, because I do agree with you on your third point that it doesn't seem that your GI doc has enough information to rule out a mast cell disorder.  My GI doc failed to diagnose my MCAD.

I don't know if you have a mast cell disorder.  But like you - I don't flush; don't have a bowel problem indicating much of anything; have only a 'light' case of dermographism; and my biopsies only showed Barrett's  - well until another doc had it stained for tryptase to look for evidence of a mast cell disorder.  

I recently read that this "tryptase immunohistological stain" has only been available commercially for about a year.  I believe your basic GI doc doesn't keep up with such things and in my opinion wouldn't know anything about it.  

Good luck.  And good for you for sticking to your guns!

Hi. You are having stomach issues in the morning because you are undermedicated. Many of us take 300mg Zantac in the morning AND the evening. So that is 600mg per day. You are only taking 150 mg per day.

Overnight we tend to trigger even more, so that evening dose of Zantac is very important.

Hey all;
Its late and this is the only time I seem to have lately to get online; so fatigue may affect my  post... I am finding sooo much useful info on this site- yet hard to put it all together and/or find it again later.
Perfect example; the book idea on Masto disorders. Cant find the post about it and its a great idea; because there is either no info on it, or conflicting info, or too much to absorb at once- depending on the source on the internet. I also think a Glossary would a big help. There are so many terms that are new to me as well as others. I have TMEP and Ive read posts where someone (sorry I forgot who) actually used the words as separate things, like telangectasias, etc-and here I thought the whole  telangectasia eruptiva macularis perstans was just a Looong name for it. I recently found out what systemic, and indolent meant; and still am not sure what Leakers are, but pretty sure "shockers" are people like Ramona- who Im pretty sure sure God put here to teach some of us it could always be worse. Anyways, just a few latenite ramblings. Youll all be in my prayers as usual.
lori

Lori, great idea for adding a glossary to a book! I don't recall who mentioned a book, but that is something I could do since I have already written a book (not masto related). Hmmmm.....

Found it! Then panicked cause I couldn't remember where to go back to so I could share with you how to find it! Lol
Anyway, the binder idea is under Emergency Protocols and Information and the topic is Binder of medical information.
Great idea and well put together.

Kim

I am so glad to hear that it helped! Continue taking the Zantac twice a day and you will continue to feel better each day even more! I think as it calms things down in your GI system, it allows things to heal up. In a couple weeks (probably less), you might feel like a whole new person! Don't forget, though, it is just as important to avoid eating or drinking any items that trigger you.

I had the privilege of seeing Dr. Afrin  on August 31st.  I was so impressed with how he has handled my "case" etc.  You will feel very well cared for!  I had never been to the "South" and Southern hospitality really does exist!  Everyone was wonderful and caring.

One thing Dr. Afrin told me (I was diagnosed with dysautonomia/POTS in Dec. 2010) is that many times neurologisst and cardiologists diagnose us with these disorders but they ALMOST NEVER are the correct root diagnoses because they almost never can account for the full range of our symptoms!!  After seeing him, I believe he was telling me that if we can get the mast cell disease under control, the other symptoms could very well go away. Now wouldn't that be nice.

Sometimes when I am up for a long time my pulse can get as high as 220.  It's icky!!  Do you wear compression hose?  I know they are a pain to put on and wear, but they will keep your heart rate down.  There are also some fairly simple exercises that will help.  If you want to PM me, I will try and explain them to you.

I have Hashimotos as well.  I am on synthroid and have been for many many years.  My tests were always abnormal so I am not sure if you can have a normal TSH, T3  and T4 and still have it.  Hashimotos is an autoimmune disease so they should be checking your ANA.  But if you are not in a "flair-up" then that too can be normal.  It is my understanding that they are still trying to figure out why many of us have autoimmune as well as mast cell disorders....another mystery.

Dr. Afrin contacted the health care system where all my docts are here in WI and asked them to re-pull all my "blocks" and take fresh cuts from each and every block (from my colonoscopy and endoscopy last year). He sent them a  list of how to stain them.  You are right, most GI specialists will not think to stain them for mast cells.  They need to be stained with CD117 and can also Giemsa, tryptase and toluidine blue.  (And don't ask me what those are, I haven't a clue!!)  He told them  if they weren't comfortable doing that in the Pathology Dept. here, they could send them to him and he would do them in SC.  So maybe that would be an option??

Now remember, I am totally new at this...but I do remember reading something that said that most histamine is produced in our bodies in the early morning hours....maybe that would explain why mornings are always so much worse than evenings.  I am not sure...any experts out there who can add something to this??  It is almost 1:00 a.m. where I live...I stay up because I feel ten times better at night! (And going to sleep is hard!)

I wish you all the best at your appointment....and hopefully you will get a diagnosis!  Let us know how it goes!
Hugs to you, Lynda