julieph85 Posted June 19, 2012 Report Share Posted June 19, 2012 I saw an endo to figure out what's causing my adrenaline reaction after I ingest carbs. I also feel greatly improve when I have eaten in a long time. Got my results today- 24 hour urine histamine was 274. Range is 0-65. My endo said she doesn't know what to make of it. She's thinking mastocytosis or an allergy causing my pots? She doesn't know where to send me to find out. The only thing is that my tryptase is normal. Could it still be a mast cell issue if i have normal tryptase? Also, are there other things that could cause such high histamine besides mast cell issues? I know this is the key because histamine is a potent vasodilator so it must be being released when I eat carbs. My heart rate drops 25 bpm when Im hungry! What do you guys think? Quote Link to comment Share on other sites More sharing options...
Christy_D Posted June 19, 2012 Report Share Posted June 19, 2012 My son's tryptase is normal, but his PGD2 and hepparin are both too high. Both of those are created by mast cells. My son has Mast cell activation syndrome, not mastocytosis. I would recommend seeing a mast cell specialist. MCAS is the cause of my sons POTS.Christy Quote Link to comment Share on other sites More sharing options...
arizona girl Posted June 19, 2012 Report Share Posted June 19, 2012 I know we shouldn't be happy when something comes back abnormal, but we know we aren't right even when tests come back normal.So I'm so happy for you that you've found another piece of the puzzle which may lead to effective treatments. I think as the research evolves they are going to find that all this different autoimmune diseases have more in common then they don't and that they effect many more body systems then previously realized.I think there is a mast cell doctor up in your area somewhere. Members if you know one let julie know. Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted June 19, 2012 Report Share Posted June 19, 2012 Julie:Great news??? (it's always great to find another piece to the puzzle). I notice that you were diagnosed with autoimmune related POTS by Dr. Goodman. If you don't mind me asking, what was it in your test results that made that diagnosis? (I am suspecting that this is the case with my daughter). We are also awaiting the test results from her 24 hour urine histamine test.Thanks!Pam Quote Link to comment Share on other sites More sharing options...
julieph85 Posted June 19, 2012 Author Report Share Posted June 19, 2012 I have comorbid RA with extremely high ANA and ssa-ro antibodies. This leads goodman to believe my pots is autoimmune. Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted June 19, 2012 Report Share Posted June 19, 2012 Julie:Thanks! Hope you are feeling better soon now that you have some more information. Quote Link to comment Share on other sites More sharing options...
DoozlyGirl Posted June 20, 2012 Report Share Posted June 20, 2012 Julie,Congratulastions on finding a piece of your health puzzle. It is wonderful when one of us can move our chess pieces forward! There is tons of great information on this site about mast cell disorders. I have recently been worked up for mast cell activation syndrome (MCAS) and two sites in particular were very helpful for me in the beginning. There is a mast cell disorders forum and The Mastocytosis Society, which includes information on mast cell disorders, including activation disorders. To add to Christy's post, a tryptase level below 20 will typically rule out mastocytosis for most people. But a tryptase above 1 can point towards chronic mast cell activation. Mast cell activation is the term used to describe the process when mast cells degranulate and dump or leak their granules which contain histamine, heparin, tryptase, prostaglandins, and over 200 other mediators. The diagnosis is made most commonly by a unique constellation of symptoms and laboratory tests showing elevated mediators. Unfortunately there are only a few mediator tests available, but the most common ones are N Methylhistamine (urine and blood), PGD2 or PGF2 (2 different prostaglandin mediators found in blood or urine), heparin (blood). A biopsy sample stained with special stains can also identify misbehavin' mast cells. These tests are very sensitive to temperature or staining technique and are best to be performed by a mast cell specialist and at their laboratory. Most people with MCAS do not have true allergies (mediated by an IgE event) but still trigger similar reactions. But true allergies can coexist with MCAS. These reactions do include symptoms that POTS and other autonomic dysfunctions can cause. Many of the medications used to treat us are also known mast cell degranulators, such as beta and alpha blockers, pain medications such as codeine and morphine based meds, anesthestics, contrast media, etc. My typical reactions start with flushing, a headache and orthostatic hypotension, many times with an really high sitting BP, which bottoms out when standing and I sometimes get an elevated HR. They get more severe when I start to vomit and I will get chest congestion/tightness, major lower extremity swelling, and angioedema. Histamine causes increased vascular permeability and the liquid portion of blood can escape into the tissues leading to hypovolemia. When I have a really scary reaction, my HR does not elevate at all upon standing, a sign of relative bradycardia. By this time I know to remain laying down and elevate my feet. I am in a full blown anaphylactic reaction and require mast cell medications to stop the degranulaiton before cardiovascular collapse. Since there are so many mediators, there are literally thousands of presentations. My mast cell specialist has seen over 300 MCAS patients and the first 70 patients all had a unique presentation. During a mast cell flare, any number of symptoms can occur. If the mediators are released quickly, an acute episode occurs. These patients call themselves "shockers". I am a "leaker" where my episodes can take hours to progress, but both can lead to anaphylaxis. There is an autoimmune component to MCAS. If your symptoms subside when you take an H1/H2 combo, then this is telling that your may have a mast cell disorder. There are also many other medications to help stabilize these mast cells from misbehavin' and triggering. And then there are medications to block the mediators from their receptors and hopefully stop the chain reaction. If any of this sounds familair, then I suggest you check into those sites I mentioned above. I didn't see the connection at first, but several mast cell opatients on this site convinced me to check it out. And I am eternally grateful for their input and prodding. This is why I continue to post about my experiences with mast cell on this site, in case others will see a connection. Best wishes in connecting the dots. Lyn Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted June 20, 2012 Report Share Posted June 20, 2012 Julie,Congratulastions on finding a piece of your health puzzle. It is wonderful when one of us can move our chess pieces forward!There is tons of great information on this site about mast cell disorders. I have recently been worked up for mast cell activation syndrome (MCAS) and two sites in particular were very helpful for me in the beginning. There is a mast cell disorders forum and The Mastocytosis Society, which includes information on mast cell disorders, including activation disorders. To add to Christy's post, a tryptase level below 20 will typically rule out mastocytosis for most people. But a tryptase above 1 can point towards chronic mast cell activation. Mast cell activation is the term used to describe the process when mast cells degranulate and dump or leak their granules which contain histamine, heparin, tryptase, prostaglandins, and over 200 other mediators. The diagnosis is made most commonly by a unique constellation of symptoms and laboratory tests showing elevated mediators. Unfortunately there are only a few mediator tests available, but the most common ones are N Methylhistamine (urine and blood), PGD2 or PGF2 (2 different prostaglandin mediators found in blood or urine), heparin (blood). A biopsy sample stained with special stains can also identify misbehavin' mast cells. These tests are very sensitive to temperature or staining technique and are best to be performed by a mast cell specialist and at their laboratory. Most people with MCAS do not have true allergies (mediated by an IgE event) but still trigger similar reactions. But true allergies can coexist with MCAS. These reactions do include symptoms that POTS and other autonomic dysfunctions can cause. Many of the medications used to treat us are also known mast cell degranulators, such as beta and alpha blockers, pain medications such as codeine and morphine based meds, anesthestics, contrast media, etc. My typical reactions start with flushing, a headache and orthostatic hypotension, many times with an really high sitting BP, which bottoms out when standing and I sometimes get an elevated HR. They get more severe when I start to vomit and I will get chest congestion/tightness, major lower extremity swelling, and angioedema. Histamine causes increased vascular permeability and the liquid portion of blood can escape into the tissues leading to hypovolemia. When I have a really scary reaction, my HR does not elevate at all upon standing, a sign of relative bradycardia. By this time I know to remain laying down and elevate my feet. I am in a full blown anaphylactic reaction and require mast cell medications to stop the degranulaiton before cardiovascular collapse. Since there are so many mediators, there are literally thousands of presentations. My mast cell specialist has seen over 300 MCAS patients and the first 70 patients all had a unique presentation. During a mast cell flare, any number of symptoms can occur. If the mediators are released quickly, an acute episode occurs. These patients call themselves "shockers". I am a "leaker" where my episodes can take hours to progress, but both can lead to anaphylaxis. There is an autoimmune component to MCAS. If your symptoms subside when you take an H1/H2 combo, then this is telling that your may have a mast cell disorder. There are also many other medications to help stabilize these mast cells from misbehavin' and triggering. And then there are medications to block the mediators from their receptors and hopefully stop the chain reaction.If any of this sounds familair, then I suggest you check into those sites I mentioned above. I didn't see the connection at first, but several mast cell opatients on this site convinced me to check it out. And I am eternally grateful for their input and prodding. This is why I continue to post about my experiences with mast cell on this site, in case others will see a connection. Best wishes in connecting the dots.LynLyn:We suspect that my daughter (who has POTS) has a mast cell issue going on. We are waiting for the results of her 24 hour urine histamine test. Her tryptase test came back as a "3". She tried taking an antihistamine last night (and then she was going to gradually add in an H2 blocker) but she said that after she took the antihistamine that she felt awful. Do you know if this happens at first when you have a mast cell issue because your body needs time to get used to the medication? Quote Link to comment Share on other sites More sharing options...
DoozlyGirl Posted June 20, 2012 Report Share Posted June 20, 2012 Which H1 antihistamine did she take? And which formulation? How/what did it make her feel? I haven't read about the body needing time to adjust to the antihistamines with mast cell patients, unlike other meds. But it could be other factors causing her issues. It is quite possible she is reacting to something other than active medication. Many of us are extremely sensitive to medications and fillers or dyes are a big issues for many of us. The azo dyes (generic chemical name for FD&C dyes) asre known mast cell degranulators. I can't tolerate any of the FD&C numbered dyes, especially the red and yellow ones. Beware that even white pills (ie generic zyrtec have FD&C Blue #1) may have these dyes. Others have issues with artificial flavorings or artificial sweetners in the readitabs or liquid versions. Others react to the source of the ingredient, such as corn, gluten, lactose, etc. Once you find a formulation that works, don't automatically assume any formulation by any manufacturer works, because these fillers/dyes change in every generic and are different among manufacturers. It has been trial and error for me to find the brands/generics that work. Many of us also ned to taper up the dose from say a 1/4 to 1/2 of the dose. When I first began taking my H1 (generic zyrtec that contained Blue #1), I also was taking verapamil (Yellow # 5) and followed the docs recommendation (non mast cell specialist) and took 3 in my first day. Big mistake! I was a mess, and landed in bed for 3 days with major OH symptoms and flushing, signs of serious mast cell reaction. I stopped taking the meds, and returned to my baseline. Neurologist figured out verapamil was an issue and d/c it. On my second attempt, I started with brand zyrtec (no dyes) and began with 1/2 pill, then took one pill a day the first week and did ok, added the second pill the next week and added the third pill the third week to get to 3 X day. I then added generic pepcid (no dyes) the next week. I have since found that CVS generic zyrtec is dye free and can take that. And I have replaced several doses of my generic pepcid with brand zantac (150 mg - red oxide, these oxide dyes seem ok for me), especially before bed and first thing in the morning due to heartburn. Also which H2 is she planning on taking? I have learned to be cautious and read every label before taking anything. I hope my experiences can help your daughter. Best wishes in figuring it all out. Lyn Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted June 20, 2012 Report Share Posted June 20, 2012 Lyn:She took 1/2 of an Allegra (her allergist recommended she start with that med since she had a prior reaction to Zyrtec). After she took it she felt sick to her stomach, felt like her skin was on fire, and her throat felt tight. (She has had these symptoms before with POTS and with meds - so hard to tell if it is the POTS or the meds causing this) Quote Link to comment Share on other sites More sharing options...
DoozlyGirl Posted June 21, 2012 Report Share Posted June 21, 2012 j,Those symptoms could very well be mast cell degranulation related. How does she do with claritin/loratidine? Lyn Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted June 21, 2012 Report Share Posted June 21, 2012 Interesting about your heart rate dropping when hungry, your endo didnt think that was sugar or insulin related? Quote Link to comment Share on other sites More sharing options...
julieph85 Posted June 25, 2012 Author Report Share Posted June 25, 2012 Rich, no one has made a connection yet but there clearly is one. I obviously have a major adrenaline rush in response to carbs but no one knows why. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted June 28, 2012 Report Share Posted June 28, 2012 Julie I think I have the same rush because of carbs. I've wondered if it was pooling but it's not like there are any signs that my belly get purple or anything... Just had a 2nd TTT this time with catecholamine levels tests when upright, it already yielded some clues, like my BP goes up when tilted then boom drops to the floor after 10 mins. Have to wait a week for the blood though..But I think tons of my issues are purely adreniline related with a lot of triggers like carbs.. But the weird thing is if it is adrenaline why does it affect my breathing poorly? They usually give adrenaline to people who have breathing problems to open up their airways, while my adrenaline chokes mine :/ Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 4, 2012 Report Share Posted July 4, 2012 PGD2Some researchers are looking at this right now.No idea on this but many do well on various antihistamines. A woman with Ank Spond and POTS like me improved a lot on them. Whether this automatically means that we all have mast cell disorders isnt clear. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted July 4, 2012 Report Share Posted July 4, 2012 Julie I did think of something where there is a connection. We're you ruled out for pheochromocytoma? Says this in wiki about it " Elevated blood glucose level (due primarily to catecholamine stimulation of lipolysis (breakdown of stored fat) leading to high levels of free fatty acids and the subsequent inhibition of glucose uptake by muscle cells. Further, stimulation of beta-adrenergic receptors leads to glycogenolysis and gluconeogenesis and thus elevation of blood glucose levels"Even if you don't have this I wonder if some of us pots ppl are affected in a similiar way because of our elevated me levels...Also the best thing for you to do is try to have your doc contact dr afrin. He is the dr grubb of mast cell issues. There is no 100% way to diagnosis because some mast cell issues are very tricky buggers Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 4, 2012 Report Share Posted July 4, 2012 I dont think that elevated histamines levels automatically exclude all other possibilities other than mast cell issues. I dont think anyone is claiming mast cell disorders are that common in POTS other than specific doctors that specialise in that area. its funny that antiinflammatories that reduced PGD2 also worsened symptoms in POTS. Quote Link to comment Share on other sites More sharing options...
issie Posted July 5, 2012 Report Share Posted July 5, 2012 PGD2Some researchers are looking at this right now.No idea on this but many do well on various antihistamines. A woman with Ank Spond and POTS like me improved a lot on them. Whether this automatically means that we all have mast cell disorders isnt clear.It would be interesting to know how many people's genetics show a problem with MCAS. 23&me is doing a study right now on people with MCAS and mystocytosis. They are actually finding gentic markers for us with the problem. It can progress to other issues and some have more problems than just an allergic reactions. I haven't compared genetics with many on the site - but, I also wonder if their genetics would show autoimmune issues - like mine did. Would be worth a trial to see if antihistamines make a difference. They do for me. I also have to use a mast cell stablizer. As for working on PGD2 levels. They are using aspirin in some to slowly degranulate the mast cell release so there isn't a surge of a release - just a slow steady release. It is also supposed to lower the inflammatory issues. Some with mast cell problems are having good sucess with this - others not so good. It seemed to make me feel worse. But, I'm super sensitve to meds. It could make some worse with their POTS - because it could cause a mast cell release. NSAIDS could help - because they raise bp's. If you have lower bp's that would be good. If you're hyper - it could be bad - because we don't need ours any higher. But, getting inflammation down - would be good - if we could find an acceptable way to do it.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 8, 2012 Report Share Posted July 8, 2012 My quote above regarding PGD2 was not my speculation, but unpublished data from a study. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted October 6, 2012 Report Share Posted October 6, 2012 its funny that antiinflammatories that reduced PGD2 also worsened symptoms in POTS.Very interesting. any info on the reverse? do PGD2 agonists decrease sx? Quote Link to comment Share on other sites More sharing options...
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