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Tryptase came out 11 again-doc said probably nothing to worry about. (Read 2418 times)
Maiysa
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Tryptase came out 11 again-doc said probably nothing to worry about.
03/28/12 at 16:14:52
 
Hematologist called and said tryptase was at 11 again, but it went down a little bit.  Umm...it was 11.4 or was it 11.6 in November, so yes, it went down half a point.  He said medicating me would not help and does not see a reason for any other tests.  Also had a compliment test called CH50 that was elevated to 60. Don't know what that means.  He said I am having a lot of inflammation and checked me for an infection but that came out negative.  He said he would see me in 6 weeks and to not worry about the tryptase since it's only slightly elevated.  I do have another appointment with another doctor who I heard works with Mast Cell in May. But the hematologist says he really sees no reason for me to see him.  I'm still going anyhow.  But is there a reason that he would think that there is no reason to medicate me?  HE seems to know about mast cell activation....a little bit anyhow.  Is it because I have autonomic neuropathy and thinks that is causing the issues.  I didn't get to talk to the doctor, just the nurse so I didn't get to ask questions.  
Any ideas?  I know Lisa has sent me notes that a tryptase over 4 is a mast cell issue. I'm sooooooo confused.   Cheesy
Thanks,
Maiysa
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Riverwn
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Re: Tryptase came out 11 again-doc said probably nothing to worry about.
Reply #1 - 03/28/12 at 17:53:10
 
Hi Maiysa!
You are at a point where you are getting more accurate info than your hemotologist is and YOU are right, not him.. time to replace him.. now, are you on any antihistamine?? The question is this.. have you taken any to help with your symptoms and did it help?? That will answer alot. The hemotologist is wrong and you are right. Time to look for a new DR and time for you to start keeping an accurate record (diary) of what you eat, what you do, what meds you take, how you feel , every day. It will help you see patterns and help your next DR too, to understand whats happening with you. You need to read about the Low Histamine diet and start on that slowly.

I hope the next appointment goes better for you, we are here for you and back you 100%!
hugs
Ramona
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Joan
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Re: Tryptase came out 11 again-doc said probably nothing to worry about.
Reply #2 - 03/28/12 at 20:17:08
 
Definitely do keep the appointment with the doc who knows about mast cells!  I agree with Ramona about your current doctor.  No point wasting your time seeing a doctor who isn't educated about your problems.  If I were in your situation, I'd ask my doctor to prescribe h1and h2 antihistamines and do a careful trial.
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Maiysa
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Re: Tryptase came out 11 again-doc said probably nothing to worry about.
Reply #3 - 03/29/12 at 06:19:48
 
Thank you Ramona and Joan, I researched the antihistamine diet last night and a lot of them I know already make me sick, but I have spinach almost daily in my smoothie, so that will be the hardest to cut out.  But worth a try.  Also, this doctor told me a few weeks ago that mast cell activation is my problem and said he was sure it was the ring leader of all of my other problems of thyroid cancer, valley fever and dysauotnomia, so I thought I was on the right track.  I'm not sure what changed his mind unless he thought I had systemic mastocytosis and I do remember him saying that he thought it was systemic in the first appointment.  Anyhow, definitely keeping the May appointment with different doctor.  I can only do little doses of children's claritin which I take daily.  Anything chemical does something negative to my nervous system, so I have to be really careful. But I did find that small amounts of benadryl helped when I first got sick but it started dropping my blood pressure too much, so I went off of it. But am hoping to keep upping my claritin doses.  It's mostly a matter of letting my body get used to it.   Thanks again.  I thought maybe I was missing something.
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Riverwn
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Re: Tryptase came out 11 again-doc said probably nothing to worry about.
Reply #4 - 03/29/12 at 11:54:22
 
Hi Maiysa,
I dont think youre missing a thing, I think youre right on track! Going slowly is best when starting a new med for all of us--and remember that your bodys natural histamine is highest at 2 to 3 am so start new meds in the am only and always tell someone that you are trying a new med.

It will take some time to have the best med schedule for you but once you do, I would bet your thyroid cancer responds more positively and starts to end. They have done quite a bit research lately and found that mast cells play a huge part in cancers forming--and once the mast cells are calmed, the tumour (or cancer) stops growing. Cool eh?? I cant wait until you are on GastroCrom, you have 2 BIG reasons to be on it...

Sorry about the spinach--we all know how giving up our favorites is, but we also see how much of a good difference it makes in our health and lives. Good luck Hon. Let us know how the new DR is.
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Ramona
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Maiysa
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Re: Tryptase came out 11 again-doc said probably nothing to worry about.
Reply #5 - 03/29/12 at 13:59:11
 
Ah...Ramona, you are just full of good news.  Thank you. Just had my 2 1/2 year schmanser check up and it was a good check up.  Yay!  So if I could get that tryptase under control that would be awesome.  Thanks again! Grin
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Riverwn
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Re: Tryptase came out 11 again-doc said probably nothing to worry about.
Reply #6 - 03/29/12 at 15:45:29
 
You are most certainly welcome Smiley YAAY for you! Just keep the good news coming LOL
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Ramona
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Joan
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Re: Tryptase came out 11 again-doc said probably nothing to worry about.
Reply #7 - 03/29/12 at 18:37:49
 
Other baby greens might be good in your smoothie, like Swiss chard or kale, if you can tolerate them.
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Joan
 
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