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Tryptase question (Read 1623 times)
TinCanOnAString
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Re: Tryptase question
Reply #15 - 08/09/11 at 11:49:54
 
So, I got my results from last week's blood tests back from the hematologist. My histamine level was actually pretty low (1.5), but my tryptase level was high (87). I can only assume that this is my baseline, as I was experiencing no symptoms whatsoever at the time of the test. I was even having a relatively itch-free day, a rare event in the last ten years.

I didn't want to hijack Patricia's thread, but this is the best topic of tryptase levels I could find. My confusion is this: I understand that high tryptase levels are associated with anaphylaxis, but I've never experienced any type of anaphylactic shock of any sort. I expected, with my constant itchiness, that my results would be reversed; high histamine with normal or slightly elevated tryptase. Any ideas?

Also, does anyone know if there's a thread here, or anywhere, with various test results that would indicate masto or help people understand their conditions better? I'm trying to find some comparison to my levels to see where I stand, but I'm having trouble getting anywhere. Any help would be appreciated.
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Patricia
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Re: Tryptase question
Reply #16 - 08/09/11 at 12:06:01
 
Wow that is high but I can tell you my father in law is 55 and he has no known experiences of shock and is 78, he found out his tryptase was 55 this winter. Some allergies, hashimotos, RA and colon cancer at 70. My youngest daughter (15) has a tryptase of 20 and her urine histamine levels where in the normal range.

Have you had your prostoglandins checked, that is done through urine and also another ingredient degranulated from mast cells.

A Bone Marrow biopsy is the gold standard for ruling out mastocytosis but its really important who does it and where, make sure its someone who is experienced in doing BMB for mast cells.

Besides all the itching do you have any other symptoms and what medications did the doctor recommend you take.



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Patricia
 
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Starflower
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Re: Tryptase question
Reply #17 - 08/09/11 at 13:28:26
 
A tryptase of 87 is a solid indicator of systemic mastocytosis... it would be a good idea to get a bone marrow biopsy.  It could be a lot worse though!  People with aggressive mastocytosis (which needs to be treated with chemotherapy drugs) typically have much higher tryptase levels.  

The one thing you can't do with a baseline tryptase is tell whether you're a "shocker" or not.  My tryptase level is only 5.6, but I've gone into anaphylaxis many, many times.  Although you should have a Rx for an EpiPen and keep one with you at all times, it's quite possible that you'll never have an episode of anaphylaxis Smiley

Heather
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When you cry I taste the salt in your tears
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TinCanOnAString
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Re: Tryptase question
Reply #18 - 08/09/11 at 14:10:27
 
I thought it sounded really high, too. As far as other symptoms, I'm covered in spots, head-to-toe. I suspect UP. They raise into hives when scratched and itch constantly (so they're always being scratched).

Systemically, I've had ridiculous reflux for the past 5 years (controlled with 2x daily Pepcid Complete until recently). I've also noticed some gastrointestinal issues recently, but nothing major and I've seen no connection to any type of triggers, so I can't even say these issues (and really, it's a stretch to call them issues) are connected to masto. Beyond that, I'm basically symptom free on the inside.

Oh, I almost forgot. In the last month, something strange has been happening with my fingertips. Over the course of about two weeks, the tips and area immediately under the nail get hard and desensitized. The skin thickens and then starts to crack. The hard skin then peels away...okay, I cut it off with nail clippers as it flakes. The new skin underneath is fine for about a week or so, then the process starts again. My PC thinks it's a circulation issue and I'm getting some type of ulceration of the skin because of it. He's not sure if it could be related to the masto. I've done some research and think it might be digital scleroderma. I'll be bringing it up at my next appointment.

In terms of medication, I'm on 5mg 1/day of the generic form of Xyzal and 20mg 1/day of Aciphex for the gerd. I also carry an epi-pen, but I've never needed it. The Aciphex works great, but it's non-formulary and really expensive ($280/month), so I think I'm going try something else. The levocetirizine (Xyzal) is an H1 blocker, so my hemat. suggested adding an H2. We also discussed upping the dose, but with the lower histamine levels of the last test, I'm not sure what he'll say.

We haven't done a urine test, and my hemat. wants to avoid a bmb if at all possible, and I'm inclined to agree with him.   Wink

Do you have an intro thread? Never mind, I'll check for it myself. From reading this thread, it seems like your family has some experience with this type of thing, so I'd like to get caught up on your story. I saw that your husband is doing better than a year ago, which is great! I'm right with you in your gratitude about this site. It's taught me that I have to take charge of this myself. My doctors are all very interested, but it seems I really have to get in the driver's seat.

Anyway, I've droned on for a while (doesn't it sometimes feel good to put this stuff down in writing). Thanks for listening.
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TinCanOnAString
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Re: Tryptase question
Reply #19 - 08/09/11 at 14:14:59
 
Hi Starflower. Sorry about that. It took me a while to reply to Patricia, so I didn't see your response.

Yes, I do carry an epi-pen for precautionary purposes, but I've never needed it.

My hematologist wanted to wait on the bmb, but that was before these latest test results came back. I'll have to see what he says when I go to the followup.
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mikev
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Re: Tryptase question
Reply #20 - 08/10/11 at 03:48:40
 
Tin:
I agree that is a very high #. I'm a leaker sounds like you in some ways. Constant skin sensitivity problems. But mine is more a pain than an itch & my tryptase is 20. I as well have never shocked & in fact my doc said I didn't need to carry an epi at all. The one thing I didn't see in your meds was gastrocrom or if not in the US ketitofin, a mast cell stabilizer. This has been the most important add of all the meds that I take. Doesn't solve the skin issue but helps. Any more questions on skin issues let me know. Just realize mine is almost always internal only rarely an outbreak.
MikeV
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Patricia
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Re: Tryptase question
Reply #21 - 08/10/11 at 07:03:42
 
What about getting tested for CKIT mutation? Heather do you know if your KIT gene is not mutated would that indicate a negative Bone Marrow? or do they have nothing to do with eachother?

Tin...its funny that you say you were on xyzal and achiphex because my husband was on xyzal for years and achiphex for 10yrs before he got really sick last year. He experienced a toxic reaction to scallops and this became full blown.

He always had a pimple like rash on his trunk and back area, would get worse with heat but nothing crazy. Had been given antibiotics, steroid creams for years and it would come and go. He got Hpilori 10 yrs ago and had an allergic reaction to the antibiotics and was put on achiphex and could never get off it. Any time we tried to stop he would get knife stabbing pain in the chest or horrible heartburn. Without our knowing it our insurance co stopped paying of aciphex and switched us to Protonix, same thing but much cheaper ($45). I wish they would have told us they were switching meds but fortunately he had no adverse reactions.

My husband started to sweat profusely, like a menopausal woman but all the docs said it was because of this hypothyroid. He had loose stools all the time and they told us to take immodium.

We never realized that when he would sweat, flush, get gassy and dizzy all at the same time that this was a multi organ reaction and he was probably very close to going into shock. Just learn to listen to your body and learn how it reacts to different temperatures, foods, stress, exhaustion ect and dont be afraid to automatically take a zyrtec/zantac or bandryl/zantac if its a really bad reaction. For some benadryl makes then really tired, it doesnt do anything to my husband so he can take 25/50mg during the day.

None of his health problems seemed like a big deal or something that could equal what we went through this past year. Its great that you are investigating further and it sounds like you have a good doctor.
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Patricia
 
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Re: Tryptase question
Reply #22 - 08/10/11 at 10:25:41
 
It's possible to have the cKIT mutation and a negative biopsy (even a negative tryptase).  It's also possible to have biopsy-confirmed SM without the mutation.  We mast cell patients come in all flavors Cheesy

Heather
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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)
 
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Patricia
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Re: Tryptase question
Reply #23 - 08/10/11 at 11:30:03
 
ugh I knew you were going to say something like that! Smiley

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Patricia
 
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