Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> New & Hoping for a New Day http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1301800688 Message started by Avonlea on 04/02/11 at 16:18:08

Title: New & Hoping for a New Day Post by Avonlea on 04/02/11 at 16:18:08 Hi - My name is Whitney.  I'm 46 & live in Northern Virginia with my husband - who is in & out of the country - our 2 Persian kittens and, occasionally, our returning college students.  Thanks to this forum for being my source of wisdom during the past 10 days, while my new allergist has tried to sort out whether I have a mast cell disorder. In retrospect, I've been having "episodes" since I was a teenager - tachycardia, shaking, low blood pressure, red & white "splotching" of my face, as my mother put it.  However, my triggers were things that might bother many people, such as heat and local & topical anesthetics, so no one mentioned a disorder.   For example, at 19, I experienced an extremely elevated heart rate during a "twilight sleep" nasal operation using one of the "caine" anesthetics.  I remember the surgeon bringing in my internist & saying, "We can't get her heart rate down."  Still, until recently, these symptoms subsided when the trigger was removed or wore off.  My dentist began using a smaller amount of novovcaine without Epi & that seemed to work. Two years ago, I was on a hike led by a park ranger.  I was used to exercising, though I hadn't done enough of it in the recent months.  It was April, but it got up to 90.  We couldn't get back to the park service building except by walking miles back the way we came.  People were not happy with the heat, and a couple of them hitched a ride from non-hikers who were driving by.  I came up too late to catch that.  However, even older people who walked back didn't end up like I did - in the ER w/a 166 HR, red as a beet & losing control of my bodily functions.  They checked me for a heart attack, gave me 2 liters of saline, removed some ticks & sent me home with a diagnosis of heat exhaustion.  I had previously been sensitive to heat, and that has continued, but I became extremely careful about it.   Last spring, my abdomen distended after eating a snack food called Full Bites from Vitamin Shoppe.  I was checked for gallstones, as I have a slow gallbladder.  No stones, but I changed my diet around to limit fats & gluten otherwise return to a more careful, organic diet.  However, within two weeks, I had to take an antibiotic for an abscess.  I reacted to Keflex, and they gave me Benadryl & Pepcid, which I learned was an H2 antihistamine.   Just as I was finishing the substitute Doxycycline - which had me not eating much - I almost fainted in the grocery store, accompanied by tachycardia.  I ended up in the cardiac wing of the ER, where a doctor ordered saline & blood tests.  One, called a D-Dimer, came back elevated.  I later learned it was a slight elevation that could just mean you have a bruise.  The doctor did not explain this & yelled at me that I needed a CT scan because I could have a pulmonary embolism, though there was no other evidence of that.   As Deborah has mentioned, avoid contrast dye.  I was too debilitated to fight with an ER doctor, though I did ask for Benadryl, given my drug reaction history.  I also ended up with non-ionic contrast dye, which is slightly less allergenic.  Still, I was ill for the next 6 weeks with redness, itching, insomnia & weakness.  I thought I had radiation poisoning.  I only regained functioning after using holistic measures. I wanted nothing more to do with doctors, even my D.O., until this February, when I was put on Prometrium, which is a progesterone pill containing peanut oil.  On the second day, I had what in retrospect was a mild reaction to the pill - chest & throat tightness & a swollen abdomen.  My GYN told me I was allergic to peanuts, when I never had been.   A few days later, I felt like I was going to pass out.  Urgent Care said it was anemia, but my CBC was normal.  I then had a minor biopsy from the GYN using Xylocaine without Epi.  A friend who drove me because my husband was out of town stayed with me afterwards.  As I was trying to sleep on the couch, she said my face was red with white spots.  She took me to Urgent Care again, where they asked me, “Is your blood pressure always this low?” and gave me Benadryl.   A month ago, I got a red face & a swollen abdomen while eating a salad at a Japanese restaurant, which they told me was sesame, not peanut.   My family said I was really red, so I took Benadryl.  Now I did not know what to eat.  Things I’d eaten frequently in the recent past, like black beans from Chipotle, began to bother me.   (In retrospect, it could have been the Chipotle rice as well.)  I made an appt. w/an allergist. On March 22, we had a new house cleaning service come in.   They told me, “Don’t worry, we use green products.”  Apparently, they offer the OPTION of using green products.  The cleaners they sent forgot.  We came home to a house smelling like 100 car air fresheners.  We opened the windows, put on all fans & turned on the HEPA filtration air purifier in our BR.  My husband woke up with a headache.   The day after the cleaning, I came home at lunch & made Rice Expressions organic brown rice with sea salt.  I took it with me as I drove back to the office.  My nose began to bother me, but I though little of it.  About 2-3 hours later, my face felt like I had sunburn.  I developed diarrhea & my heart began to race.  I took Benadryl & Pepcid, ended up at the ER shaking & red as a beet with a HR of 121.  They tried to give me Prednisone, but up it came.  We told the ER doc about the cleaners & he said I may want to go stay in a hotel, but we’d left the windows open & fans on & the house smelled normal again.    Plus, at this point, who knew what we’d encounter in a hotel? We headed to the allergist, who said my problem didn’t sound like a food allergy, as they really don’t develop in mid-life.  (Indeed, my peanut allergy blood test was negative.)  When my husband described my 2010 CT scan reaction, the allergist murmured, “mast cell.”  He said that iodine contrast dye can trigger degranulation of mast cells.  He said I needed an L-tryptase test.   I was actually relieved on the food front.  For the first time in weeks, I came home that night with lessened food anxiety.  I looked up a low histamine diet & plain cereal was approved.  I ate a bowl of cereal that had – yes – brown rice in it.  Within moments, my HR spiked & I had diarrhea.  I got in bed, violently shaking & flushing.  I took Benadryl & Pepcid again & my husband called 911. The paramedics said my HR lying down was 150, but my breathing was good, so I didn’t need Epi – which they didn’t want to give to me because my HR was so high.  My BP was also up.  They gave me oxygen & tried to get an IV line in, but could not until we were in the ambulance.  They said I am "valvey."  The head paramedic stayed with me.  I told him my allergist wanted to check me for mast cell & his eyes snapped.  He responded, “That makes perfect sense.”   He went into the ER & told them.  As they wheeled me in, there at the desk sat the doctor who had ordered the CT scan last year.  I told my husband not to let him near me.  A different doctor came in & ran a tongue depressor along my arm & the skin turned red.  At this point, they drew blood for the tryptase test & sent it to the Mayo Clinic.   I had a rash on my legs after my next shower.  I saw the allergist this past Monday.  He advised me to chew my food very thoroughly before swallowing.  He told me to take antihistamines, though in my condition they are dehydrating me.   But as he put it, “Better dry & eating than moist & starving.”  Still, I’ve struggled to eat & work in the days since.  Baby food – no rice! – seems to work.  I flush most evenings.  (The allergist asked me if anyone else saw this.  Fortunately, yes, and I took pictures.  Otherwise, what, I’d be imagining it?  He also told me I could go 2 weeks without food, but that I needed to keep drinking water.  So I drank a steady amount & became overhydrated.)   To combat the bloating, I was already off gluten, dairy & nightshade vegetables, now rice is a huge loss.  I’m having pears, applesauce, pureed blueberries & pureed sweet potatoes, plus baked organic “Smart Chicken” breasts from Harris Teeter.  I got through a few Kettle brand organic potato chips, but those worry me, since nightshades cause inflammation.  A few kernels of Trader Joe’s organic popcorn with olive oil cause me to wake up with a start, with a racing heart rate.   The eating advice on this forum has been very helpful.  I’m considering sorghum & quinoa as grains. My allergist did disappoint me by saying that what I was experiencing was “not anaphylaxis,” because in the 2 recent episodes my BP went up, not down.  I’m glad to read here that he’s wrong about that.  On my latest test orders he wrote the diagnostic code 708.1, which is idiopathic urticaria.   I’ve had two Reiki sessions & those help me feel stronger & calmer.  I spoke with my brother, and he had similar symptoms of bloating, redness, dizziness & sweating after eating Indian food a couple of weeks ago.   He described it as his stomach “bowing out.”  I advised him to get a tryptase test and keep records.   I am worried about him, as he is on beta blockers, which can blunt the effects of epinephrine if he should need it.  We also question whether our mother has a mast cell issue, as she went through a chronic fatigue type episode over several months in her early 40s.  She has been diagnosed with rosacea, though her redness comes and goes, so I'm skeptical.  Has anyone else here had family members with the same symptoms? Thank you for being here, Whitney

Title: Re: New & Hoping for a New Day Post by Joan on 04/02/11 at 18:30:38 Hi Whitney, Sorry you've been having a rough time!  Are you aware that there are other disorders that can cause similar symptoms to mast cell diseases?  Those need to be ruled out before a mast cell disease can be diagnosed.  There are posts on this forum regarding testing and where to begin, and you can find more specific info there.   One important fact is that with carcinoid syndrome, which has very similar symptoms to mastocytosis, epinephrine can be very dangerous.  Without a proper diagnosis, a doctor is wise to hold back on the epinephrine even when flushing, tachy, and the other symptoms are present. There is a familial form of mast cell disease, and I know a family that has it.  A parent and 1/2 the children have the mast cell disease, but the other parent and the other children don't.  I think theirs goes back another generation at least.  Rosacea can come and go, too, so it would be difficult to distinguish mast cell disease from rosacea without testing. It is generally recommend that people with suspected mast cell disorders see a mast cell disorder specialist.  Fortunately, you are located not too far from two excellent places to find one, NIH (Bethesda, MD) and Brigham & Womens (Boston).  Dr. Akin and Dr. Castells are probably the most known and respected U.S. specialists in this field, and both are located in Boston. Doxycycline can cause direct histamine release, even in people without mast cell disorders. When your digestive system is irritated, you can react to many foods, and they're not technically food allergies.  Trying to heal your digestive system is very important to feeling well again.  You might want to ask your doctor about a daily regimen of antihistamines (H1 and H2) to relieve your symptoms, but still contacting an expert is very important.

Title: Re: New & Hoping for a New Day Post by Josie on 04/03/11 at 01:16:31 Hi Whitney , I am sorry you have had such a horrid time , i experienced similar ;-( But the doctors are on the right road now . You can have anaphylaxis with high blood pressure . A varient of mast cell disease had a hypertensive version , you have had a low blood pressure episode , a copy of that ED card would be useful for you ;-) My blood pressure has been very high (200+ / 150 ) . It does drop but early in a reaction . I bought a wrist BP cuff and caught it - 70/40 . In my case my breathing deriorates before my BP bottoms out ( normally ) so I have had an epi pen by the time it does . The low I mentioned was just after an epi pen . Most doctors can't accept anaphylaxis with high blood pressure , The other thing that your body does is compensated shock , where your body puts up your blood pressure to compensate for fluid loss and high heart rate . I think this may have been happening in certian situations . There is an atricle here on triggers , you will find yours are there . I completely see that heat affects anyone , but mast cell people don't just  get heat stroke . We get activation of the mast cells and symptoms from the chemicals released . I think understanding these chemicals will really help you understand your symptoms . When they scratched your skin you describe showing dermatographism . It can be a normal thing , but wit everything else it points to mast cell disease . As the extra histamine circulating leads to an over reaction to a minor scratch . I get this , you are in good company . I think you should discuss antihistamines with your doctor as medicating will not affect tests . I also think you also need to see a specalist in mast cell problems asap . Excuse my tone , I say this because you are having near misses and you need to see a doctor who knows this condition ;-) It is possible you have another condition .  The alternatives need testing for asap as well because if you have other things they need attention . if not , you can then carry an Epi pen . I have also had the expereince of high pulse = no epi pen . The first time i was epi'd in ED my pulse was 180 . It settled in an hour of having the Epi pen. Foods ;-) yes , I felt as you did when i was told it was not a food allergy . I also went on to react again . This contradiction is because with a mast cell problems there are other routes by which mast cells burst ( degranulate) which are not due to the typical allergy route . Certain local anesthetics are known to be more risky for mast cell patients . The mastocytosis society , has lists of anesthetics and their risks . There are also 3 vids on you tube , by the specalists Joan mentioned , which I think you will find very interesting . They are called :- mast cell activation symptomology . I ahve pointed some perplexed doctors to them . Mast cell disease is seen as an orphan disease , affecting below a set level per head of population , so it is mention briefly at medical school and many doctors will never have met one of us . So you will find you have to give some , even ED doctors , time to catch up ;-) I think , From here , you should have pre medication for any procedure . there is a protocol available . You expereinces are no surprise to me . mast cells , in mast cell activation , can be triggered by pain , physical and emotional stress . So you need protection in any invasive procedure or those with risk of mast cell activation ;-) Given you history , I would expect your tryptase to be raised . BUT it may not be . There are types of mast cell disease where the tryptase is not raised . Also tryptase is relseased whne mast cells burst and is highest in the 4 hours post an event . The 1-2 hour mark most so . So it may be it has just been missed . Mast cell probelms fall into clonal and non clonal . Clonal means extra cells where they shouldn't be . Non clonal means a normal volume . Both types of mast cells misbehave and burst too easily to triggers . Clonal is named mastocytosis , various types . Non clonal - mast cell activation and / or idiopathic anaphylaxis . Clonal types produce consistantly high tryptase as there are lots more mast cells to be naughty . This would give a high level at rest and /or in a reaction . Non clonal give high tryptase only in a reaction or not at all . There are exceptions to this . MMAS , is a clonal mast cell disease but the extra cells are not enough in big enough clumps in bone marrow to be classed as mastocytosis as its defined formally by the world health organisation . MMAS , typically has normal tryptase . The medications are the same and there are some cross overs in tests . But the distinction remains ;-) I would happily go through your past episodes and highlight possible triggers if you would like me to ;-) Popcorn is on the low histamine diet , for me this does not apply to butterkist , its been a biggie inducer for me ;-) My current diagnosis is idiopathic angiodeama ( swelling ) my doctors are catching up with my serious reactions . I have airway problems as my ED going symptoms , alongside tachycardia , dizzyness , bright red burning flushing , swelling . My tryptase is normal . I am still being investigated ;-) ill stop now ;-) Josie

Title: Re: New & Hoping for a New Day Post by Avonlea on 04/03/11 at 03:11:14 Thanks Josie & Joan - Your experience is invaluable.  We are testing for other things.  The allergist THINKS the tryptase test is normal.  It was taken within 1-2 hours of the onset of symptoms. He said he had to do a bunch of calculations upon receiving the results. I bought a BP cuff as well.  It's normal when I'm not having an episode.  I think that not having eaten much & being dehydrated contributes to the problem. He's ordered a  24 hour urine w/fractionated metanephrines & catecholamines, plus blood plasma metanephrines and another serum tryptase.

Title: Re: New & Hoping for a New Day Post by Joan on 04/03/11 at 05:16:22 Glad that your doctor is taking this seriously.  Do look up Starflower's post regarding how to proceed with testing to rule out other possible causes of your symptoms.  Hope your answers come soon!

Title: Re: New & Hoping for a New Day Post by Josie on 04/03/11 at 05:32:00 Hi Whitney ;-) I am very pleased your doctor is proceding ;-) I would ask him to test for carciniod , he is already testing for the other major condition which mimics masto . Carciniod has high blood pressure in a crisis , so the low that has been recorded goes against that BUT it is important to exclude these ;-) Carciniod gives out hormones and you need those looking for :- Its another 24 hour urine collection . For 5H11A , a metabolite of serotonin and a blood test for Chromogranin A , these 2 tests together will exclude this for you ;-) I have been tested for these . My doctor described them as rare squared as they are very rare BUT need checking for . Then you will know excactly where you stand ;-) You have found a doctor who knows what needs excluding . If you tryptase is normal and these tests are negative , he may stand down a little . if so I have a copy of a document by DR castells et al , which discusses other forms of masto . You can also have anaphylaxis and not know the cause . This is known as idiopathic . From what you have described , you have evidence of this in your ED presentaions , but you may need to request the paperwork ;-) But one step at a time ;-) Josie

Title: Re: New & Hoping for a New Day Post by Riverwn on 04/03/11 at 09:07:16 Hi Whitney, and welcome to the board!!! Im so glad you joined us and i think we have some help for you here. Youre telling my story with the episodes you go through--and I worry that yours will get worse as mine did--I do NOT want to see you go through anaphylactic shock, so lets start changing things for you. Remember one thing, that eating istelf may be a trigger for you (because you arent medicated as you should be right now)... Its because the bodys biggest venous pool of blood circulating, is in the stomach. Food or the act of eating stimulates the circulation, which can kick mast cells into reacting.. First you have to get on the right meds for you--you need; both H1 and H2 blockers, proton pump inhibitors and mast cell stabilizers. With a mast cell disorder, it isnt enough to take meds AFTER you react, you must be PRO-ACTIVE. Once you have reacted, the next few days its easier for your body to react again, see? Now remember that the foods you ate werent necessarily the reason for the reaction (like the rice).. BUT... DO stay on the low histamine diet.. once you are stabilized, you can try each food and see what you do and do not react to.. you must be stable first, before trying this. Next Point,  you react and you sound like you have what we call 'Hypertensive Variant'.. it means that your BP spikes when you react.. but I would bet that you BP also starts dropping within 3 minutes?? It may drop to the point of being very low. In other words, you need to see exactly how your body responds to epi---many of us who have that same trait--(hypertensive variant), do very well with epi--it makes our BP gp back to near normal... but do NOT take epi until you are tested for Carcinoid Syndrome. You said something very telling--about the Dr saying you are very "valvy". What that means is, you veins and circulation also react when you are having an episode. You are in the beginning of circulatory collapse..thats why they have difficulty getting an IV in you if the dont do it quickly. So, remember to tell them, get that IV in quick, or they may not be able to get it. Are you on any meds for high blood pressure?? If you are, then remember that we cant take beta blockers--it will make those reactions worse and even trigger them. We do much better with Cardizem, which is a calcium channel blocker--and it will even help the tachycardia. If you have a rash on you after a shower, it means one of two things.. you are either using water that is too warm for you OR you are using a product in the shower that is triggering you. Exercise is also a trigger for most of us--it doesnt mean you wont ever be able to exercise again--but for now, stop.. until you figure out what type, amount of exercise is safe for you and build up slowly.. do NOT do this, until you are stable. We notice that our family members usually have a strong medical history of auto-immune diseases. Also, most DRs say that this is too rare for there to be more than one family member with it--but recently they are finding out this is wrong and have found more than one peson in a family that has some sort of mast cell disorder. Whitney, you will get used to the dryness of the antihistamines,.. just carry a bottle of water around until then. Did they eve give you the results of the Tryptase they drew?? Try to get that result, it might help alot with the others DRs. I dont know about any calculations with the results.. its a number.. over 8 is higher than normal, over 20 is considered indicative and diagnostic of mastocytosis... Im thrilled the DR ordered the 24 hour urine for Histamines.. Please let us what what comes of it. Take care of yourself. stay out of the heat, no hot showers stay on the low histamine diet--keep a diary from now on of what you eat, what meds you take and how you feel during the day. Talk to your DR about going on Zantac twice a day, include some H1 and H2 blockers and take these meds ever day, even when you feel fine--we are trying to AVOID episodes ok??  :) Hugs, Ramona

Title: Re: New & Hoping for a New Day Post by DeborahW, Founder on 04/03/11 at 09:44:50 Hi! I have lots of info for you, but am stepping out right now. So I will come back later and post. You sound like my symptoms; I have idiopathic anaphylaxis. I think you need some guidance on what to eat, and I will definitely give you some suggestions. In the meantime until I get back, look up my intro story in this section.  I think reading my story and what I did to get better may help you, as I see similarities between you and me.

Title: Re: New & Hoping for a New Day Post by DeborahW, Founder on 04/03/11 at 09:53:02 Oh, I should mention that you will find my story at the top of this "Introduce yourself" category.  :)

Title: Re: New & Hoping for a New Day Post by Avonlea on 04/04/11 at 00:53:49 Thank you, Ramona & Deborah.  That IS the tricky part - figuring out what to do next.  It's hard to concentrate on much else these days, never knowing what will set me off - toothpaste?  Hypoallergenic body wash?  The allergist couldn't recommend much in the way of food.  He did say Zyrtec (pm), Allegra (am) and Pepcid 2x per day.  Zyrtec made my heart jump + race.  I do better with Benadryl dye free liquigels- they don't make me very drowsy anymore.  Pepcid is fine.   I'm not on any type of blocker.  My BP is usually normal.  Yesterday mid-morning it was 90/70, on the low side.  It has only spiked during these episodes and then has come down. Best, Whitney I have a reunion this weekend.  We'd been looking forward to it - now it seems like a minefield.

Title: Re: New & Hoping for a New Day Post by Josie on 04/04/11 at 01:44:04 Hi Whitney , I have touble with toothpastes and body washes . Mine orginate from sodium leureth sulphate , the foaming agent. i ahve replaced all my products with SLS free products with no alcohol and I can bathe again and brush my teeth . I still fulsh when I brush my teeth , this is because you ahve lots of mast cells in your gums . i use a soft toothbrush and don't press too hard . This has stopped me itching ;-) Most bath products gave me trouble with inhaling the vapour as well as sitting in it . Soaps wise I have to avoid gelatine . So , I can use one brand here in the UK . Cool baths help a lot too as I can't tolerate hot water at all . i get overheated and itch even before any products come into play . Meds wise I think you are under medicated at the moment .I ahve a diagnosis of idiopathic angiodeama . I ahve anphylaxis , I am just getting doctors up to speed . But I am not diagnosed yet . As a guide I am on :- am Ranitidine 300mg  ( H2 for stomach and bowel ) ceterizine 10mg     ( H1 non drowsy , for chest) piriton 4mg            ( H1 drowsy for chest and general itching ) hydroxizine 25mg   ( H1 drowsy strong , for brain fog and cystitis ) hydrocortisone 10mg ( for not working adrenals ) cyclizine 50mg ( antihistamine anti sickness ) oxycodone 15mg ( painkiller - best of a bad bunch ) paracetamol 1g    ( temp control , mops up prostogalndins ) loperamide as required ( for diarrhoea ) Singulair 10mg - for lungs and swelling Lunch :- pirtion 4mg paractamol 1g Tea :- piriton 4mg paractamol 1g Bed :- piriton 4mg paracetamol 1g ranitidine 300mg hyroxizine 25mg caterizine 10mg oxycodone 15mg (8pm ) Singulair 10mg Overnight if required :- piriton 4mg I didn't tolerate allegra , due to the filler , I couldn't get a liquid form here ( UK ) . Most ppl here are on 180mg twice a day . A proportion don't tolerate ceterizine ( zyrtec ). many liquids contain vinegar which is a common trigger . I know this looks a lot , but it makes a huge difference to me . I still get minor flushing . My bowel still swells ( not as often as before )  . I have frequency of my bowels still , but no diarrhoea  or rebound pain . My constant pain is still present . I am waiting to see a specalist locally who comes recommended by the UK top doc for mast cell .  We are doing this as I have the oppertunity for a specalist who could see me in ED . I would put money on you having had symptoms for many years you now see as normal which are due to this condition . I had , they are much better controlled ;-) A mast cell specalist would be a real bonus for you ;-) I spent 20 months having anaphylaxis and close calls before I got to a specalist team who knew I was ill . The day they said they believed me , that they would treat me was so good . There are specalists who know this condition ;-) Over time I have sussed many triggers for me . i can not tolerate any sulphite food preservative at all . Since clearing my meds and foods I have had an imporovement in my bowel and gerneral reactiveness .t I was having lose stools 7-8 times a day on constipating medications . With searing reactal pain and a rebound to the right upper side of my tummy . Now I have stabbing pains in the right upper side sometimes , in clusters through my oxycodone . Other wise my pain is controlled . Between this and the meds I am only going to ED every3-4 months . It was every 3 weeks or less in spring . It is spring here and I ahve avoided ED so far ;-) I am hoping for gastrocrom , the mast cell stabiliser , as treating my abdomen will ( hopefully ) lead to me being able to wave goodbye to my painkillers . At the mo without them I am in a mess ;-) The reunion ?? if you do go i would do so dosed up and eat nothing there . Drink your own beverages to reduce your risk . I can tolerate being around lots of alcohol for about half an hour before i get itchy . My main problem in venues are the toliets and the cleaning products , cat people  and highly fragaranced people . You could make a skype visit , ask a friend if you remain in contact , or the organiser to have laptop , with you on video skype , so people can sit and chat to you , but they can keep their fragrances and alcohol fumes to themselves ??????? I have had to let events like this pass for me , as , at the time my risk was too high . This included my mothers 60th . I hope you are well today ;-) Josie

Title: Re: New & Hoping for a New Day Post by Avonlea on 04/04/11 at 03:33:00 Wow, Josie, I'm glad you are on the right track.  Where are you in the UK?  I found that going to Bath helped me.  My husband is there for work.   Does anyone take Vitamin C or Querecitin to help with the day to day gastro inflammation?  Have you done any work on leaky gut? I just retrieved my tryptase.  It is normal - 2 - and that was taken during an episode. My metanephrines are also normal.

Title: Re: New & Hoping for a New Day Post by Josie on 04/04/11 at 03:49:09 Hi Sweets , As I said before a normal tryptase does not exclude mast cell disease . Mine in 3 on a good day and 3 in a reaction . I am glad your metephirines are also normal . It makes a pheao far less likley . I live in Bristol , the next city over from bath . I visit bath a lot as I have friends there . One works in ED there , so if you ever have to visit you will find a team clued up about mast cell disease as she has educated her team . She is a sister . A consultant there spotted the potential of mast cell disease in me in April 09 . I have also had problems since my teens , but they have got worse since july 08 Jose

Title: Re: New & Hoping for a New Day Post by Avonlea on 04/04/11 at 05:43:56 Hi - That is great to know about Bath.  The "neighbors" we have there are wonderful.  There isn't the isolation one frequently finds in US neighborhoods.  My whitened Waitrose sea salt may have helped to set me off, though  :) I was already groping my way to some of these remedies.  My doctor had me on Benadryl last summer to try to get me to sleep. I've been using mainly natural products for several years, but the SLS-free is still hard to find.  I use Seventh Generation cleaning & detergent products, but I've moved to the Free & Clear variety.  I use Desert Essence toothpaste, which is SLS free.  California Baby shampoo & body wash is hypoallergenic & fragrance free, except for coconut oil.   I still need a hand cream - I'm wary of beeswax & shea butter, which most seem to have.   So much for getting a facial & my hair done for my reunion.   I have lost 18 pounds in the past 7 weeks, but this is no way to do it.    ::)  Still, eating pureed & well-chewed organic foods has calmed my gastro bloating way down. Did I read somehere here that Benadryl as a daily H-1 blocker is problematic? Best regards, Whitney

Title: Re: New & Hoping for a New Day Post by Josie on 04/04/11 at 06:12:13 Hi Whitney , Bendryl , H1 , with the drug name ending in amine is ok . This has come from Dr castells to one of her patients . There was a bit of a mix up ;-) If you are open to the option of ordering from abroad . The company Boots , which has a pharmacy , hold sls free products , called the naked range . shampoos  , conditioners , bath products , shower products . Some soap and glory products are sls free . Body shop do a SLS free shampoo and conditioner - honey . A company called Lush , do handmade bath bombs ( fizzy ) . they have a branch in Bath , but I would get your husband in there as they have some sls products and I itch in there but I can use a few of the bombs . I can use body shop soaps , the strawberry one . the cocnut and vitE ones make me flush . TIGI do a shampoo advertised as sls free . It is but they have a very close ingredient so I react to this . Bath has all these stores ;-) Cleaning product wise I am Ok with non biological clothes soap . But I have only 2 home cleaning products . Disinfectant and bleach ( chlorine )  Everything else sets me off . especially vinegar based ones . 2 supermarkets here , use something to clean their chillers which makes me flush on my hands as soon as I put my hand on it . I also progress quickly needing instant medication . i don't go in supermarkets at all now . I do online shopping . Anything whitened is a no go for me , As sulphites are often used for whitening . Sensodyne pronamel is a UK toothpaste that I use it is the only one . You've discovered waitrose ;-) Just a tip , don't go in their loos , they are jammed with air fresheners . My near miss recently came from one . By near miss I mean just short of shock , but not far .  I avoid public toilets as much as possible . Service stations and waitrose have proved worse for me . I never thought I would complain toilets were too clean !!!!!!!!!!!!!!!!!!!!!!!!!! When you visit the Uk , the bendryl is different . bendryl in the uk is a NON DROWSY h1 called ceterizine . which is a once a day drug The US benadryl is a drowsy type one , ending in amine The alternative drug OTC in the UK is piriton / chlorpenamine mealate Hand care wise I have had the same experience . I use baby oil now . Even aqueous cream makes me itch within half an hour so i have somewhat given up . many hugs Josie

Title: Re: New & Hoping for a New Day Post by Avonlea on 04/04/11 at 07:08:04 The Waitrose loo in Bath is nasty, as I recall.  I had my office shut off the auto-air freshener in our loo as I was holding my breath in there. We have Lush here as well - the store can smell overpowering.  it's interesting, I used to be into aromatherapy & it didn't bother me, unlike drugs & heat, which always have.  Glad to hear of the Boots range.  If I can ever make it on the plane trip again I'll feel OK being in Bath.  My husband should be flying back in 2 days.  Do they make a piriton with no additives? I am trying to get my allergist to order up the carcinoid tests as well.  No point in doing the 24 hour urine twice.  Carcinoid does not sound fun.  However, I recently had a normal CA-125 test.   Hugs back, Whitney

Title: Re: New & Hoping for a New Day Post by Josie on 04/04/11 at 09:28:11 Hi Whitney , Would your husband have a chance to go to boots before he comes home ? :-) Boots may do a version , but the piriton has benzoates in . sorry . Try a pharmacy on line called martingdale , as they make my hydrocortisone which is preservative free ;-) There are 2 other uk generic pharamcies in the medication section under vitamins ;-) Several others  on here have meds made up for them at compounding pharmacies . you could start a thread as you need a way of getting safe meds ;-) If you go into medicines and click on now topic and go from there ;-)   If you fancy staying in the safest masto / mast cell house , i would say in the UK , when your husband is over here you are welcome to my spare room ;-) Air fresheners for me are alcohol and fragrance related . i can suss one immediately i walk / wheel  in somewhere . I use a wheelchair for distances because I had lots of anaphylaxis and i get short of breath . My legs are also wobbly due to my nerves in my pelvis being pressed on by fluid and swelling . hugs Josie

Title: Re: New & Hoping for a New Day Post by Avonlea on 04/04/11 at 11:03:11 My allergist is properly trying to send me to an endocrinologist before he orders more tests, which makes some sense, as he is in the immunology, not endocrine field. He wants me to wait to do the 24 hour urine metanephrine test until I have another "episode," as he thinks it won't "catch" anything unless I've just had a shock experience.  He has been focused on the pheno testing.  I raised the carcinoid with him & he realized it was on the list of possibilities, though he'd rather have an endo deal with it.  Of course he's rather perplexed, as no test we've done thus far has been remotely abnormal. I ate a couple of those Good Health Naturals potato chips made with olive oil & they did not sit very well. Best, Whitney

Title: Re: New & Hoping for a New Day Post by Josie on 04/04/11 at 11:23:33 Hi Whitney , I am pleased the carciniod test will be done . A opinion from endocrinology is good , but it should be done soon . A normal tyrptase essensially rules out systemic mastocytosis . But it doesn't rule out the non clonal conditions . i ahve a paper by an amercian specalist who discusses mast cell activation syndrome . Another option is idiopathic anaphylaxis . Tryptase can be raised , but only during a short period immediately after the onset of a reaction . - up to 4 hours . But only 30% of anaphylaxis has a typtase rise . I think , In this , you have reached the limit of your allergists understanding of mast cell disease . This worries me , as I want you to be safe sweets . The histamine 24 hour collection can be done anytime but is more likely to show a large raise in an episode . But if you are reacting often on a level to give your symptoms , then it may be raised . Are you worried about going to a specialist in mast cell ? I suspect this doctor has decided you have a carciniod , but the symptoms of carciniod and mast cell activation have a very similar list . So he can not decide one is more likely than the other . I don't want you to have a serious anphylaxis sweets whilst you wait . i say this because you have had a blood pressure drop and carciniod has a pure hypertensive crisis . hugs Josie

Title: Re: New & Hoping for a New Day Post by Avonlea on 04/04/11 at 11:39:38 Thanks, Josie.  I actually raised carcinoid with him because the lab told me I could do both 24 hour urine tests from one sample & I didn't want to do it multiple times.  I hadn't realized that he wanted me to wait for a crisis to begin, for fear that just doing it now would be a waste of time.  He had been rushing to get me the phaeochromocytoma test orders last week in case I had one over the weekend.  But except for the 24 hour urine test, those tests would actually be a repeat, as all my bloodwork on that was normal.  My tryptase blood test [i]was [i] taken within 1-2 hours of the last episode - at a 2. However, I also have a ~1 inch brown patch on my chest that has been known to come and go. I'm not worried about going to a MC specialist - I just wanted as many of the obvious labs as possible in place beforehand, as I assumed I'd be traveling to see one, though surely there is one at the National Institutes of Health in Bethesda?  I'd like to head to Boston, but there is also the doctor in Richmond.  I am supposed to travel to Duke this weekend, so if I make it there safely, I will be in good hands with them.   Best, Whitney

Title: Re: New & Hoping for a New Day Post by Josie on 04/04/11 at 11:45:39 Hi Whitney , cool . The one thing i would say is true mast cell speclaist speclaists are worth traveling for . I understand getting as much in place as possible ;-) Jose

Title: Re: New & Hoping for a New Day Post by Lisa on 04/04/11 at 15:19:51 Hi Whitney, I'm sorry to only be popping in now, I've been swamped and unable to find the time to stop in for a moment. Whitney, I'm originally from Falls Church, Va, so you live in my old stomping grounds!   Are you a native or an import?   If an import, where are you from originally?   Where are you living in Northern Va?   The reason why I ask is that you're actually living in a good area for masto in that you are right next to the NIH and there are open studies for anaphylaxis which you could qualify for easily I believe.  They would in turn investigate you for masto and that would lead to having some kind of diagnosis of your situation.  And since you are actively working with doctors who are trying to track this down, I'm sure you won't have such difficulty getting into the NIH that others might not being from the region.   Patients who live within the DC/Baltimore region have doctors know that the NIH is the reference point for hard cases, and so they don't hesitate to send patients there as they might in other parts of the country.  So, if you tell your doctor that you are interested in some studies on anaphylaxis, I'm sure that they will try to help you get in. However, as to masto experts, you have another who is down in Richmond at VCU.   Duke is not known to have any authorities in masto, so don't get your hopes up for Duke.    I have cousins who live down there and one of my cousins is working with some issues having to do with an aortic aneurysm and he's got doctors up at Harvard who said that for the area of cardiology, Duke is great.  But knowing what I do about masto, I've not heard of a single authority at Duke for masto.   Where you want to go is to VCU in Richmond.   Okay, I know, VCU, it's not considered a "DUKE" or "PRINCETON" and when I was graduating from highschool anybody who said they were going to VCU was looked at as mad for there are other Virginia Universities which have bigger reputations, like UVA or  Washington & Lee.   But the fact is that Dr. Lawrence Schwartz was from Harvard and took up a position at VCU for some reason, so in that respect you've got a touch of Harvard at VCU, for the man is a well known authority in mastocytosis.   I would highly suggest that you see him, and I have his contact information which I will send you along with the other info you requested. As to those tests you're talking about, there are 3 24hr urine tests you need to do - this would be testing for masto as well as carcinoid. The carcinoid urine test is correctly named  5-HIAA.  These are for methyl serotonins.   The masto urine tests are for Methyl-histamines and also Prostaglandins D2.  Both of these are markers for proven MC activation.   As you know the blood test for masto is tryptase, and that for carcinoid is CGA - Chromogranin A  and another is blood serotonins.   This is pretty much the round of tests, however, some of us masto patients are also autoimmune and we have similar markers.  Heather has had her High Affinity IgE receptrors tested and hers was positive.  ANA seems to be a marker for some of us as well as thyroid.  I also have the ASST skin test which came out positive on me - it's an autoimmune test for Chronic urticaria (which I do not have) but which I tested positive for anyway.   It proved that I'm allergic to my own serum!!  Weird, but then that's masto!! Another test I would recommend that you do, but only in a hospital setting and speak with your cardiologist about this.   It's the stress test. My cardiologists and endocrinologists were trying to pin down my hypertension in crisis and they did all of the catecholamines, etc.  I had some cortosol increases, but not enough for the pheochromocytoma, a neuroendocrine tumor.  So, everything indicated that it was connected to the masto but it was only after I did a stress test and was put into anaphylaxis by it that we removed all doubts.   I had been 3 days off of my hypertension meds.  I'm not hypertensive, but only in crisis.  Yet my pressure has spiked up to 230/110!  Anyway, the morning of my test I held off my antihistamines just to see what would happen - my doctors knew.  And sure enough, the stress triggered a reaction of anaphylaxis - not a bad one, but one which showed them the face of the disease.  They kept me hooked up while they laid me down and gave me my medicine.  Within about 10-15 minutes my symptoms came back under control and my pressure lowered from 170/110 to normal once again!!   THEY WERE AMAZED and they were able to make the declaration that my blood pressure changes are completely and totally dependant upon the MC mediator release.   Yet, the opposite is true as well and when I've got my BP in the valleys, the best way to pull it back up with with my antihsitamine.  Epinephrine really is the best way, but I don't have an epi-pen and so I must use antihistamines  (I live in Brazil and we can't buy them here, epi-pens are not made in Brazil.) So, this is a valid suggestion for your cardiologist and endocrinologist in that if they were willing to try you out with a stress test and allow the reactions to be provoked, then see how you respond to the antihistamines or epinephrine.  However, depending on how bad your reactions are, this can be risky.  I would never have done this were my reactions of anaphylaxis as bad as they can get.  Most of my reactions are pretty self contained and I only occaisionally "explode" with big reactions, but this isn't often.  So this is why I didn't have any issues with a provocation.  I know where my limitations are and I fully respect them!   But you may be different and you need to listen to how your body responds. I hope this helps you!!! Lisa

Title: Re: New & Hoping for a New Day Post by Avonlea on 04/04/11 at 23:14:33 Thanks so much Lisa!  I'm in Chantilly, so very near FC.  We seem to have very similar symptoms.  I don't think the paramedics could quite believe it either.  Then they got the oxygen on me & perhaps the meds started to kick in & the BP came down.  So then they could get the IV in.  Now for me, I may say that my worst problems have arisen from letting myself get into a state of low blood volume, through, for example, not eating enough due to confusion over what I thought was an allergy, or in the masto case,  a trigger.  My body then fights hard to keep my blood circulating +in the process raises the pressure & HR. I was just going to Duke incidentally, and my allergist mentioned that the immunology dept. is excellent.  He didn't mention masto as he's not focused on masto b/c my tryptase is normal. I would likely seek out Dr. Schwartz.  Although, like you were, I'm fixated on carcinoid right now.   Regards, Whitney

Title: Re: New & Hoping for a New Day Post by Lisa on 04/05/11 at 15:55:32 Chantilly!!  haha!! Old memories cause I used to go to a boarding school in Middleburg and we'd have to go through Chantilly!!  Old memories!!! Yes, Whitney, going after carcinoid is important and needs to be ruled out.  I've been there, done that - TWICE!!   I forgot to send you information for Dr. Schwartz!  I'll send it to you now. Again, Duke may have a good allergy program, you are still not going to get the search that Dr. Schwartz will do.  He's a top notch immunologist AND a masto authority.  He'll do the complete immunological/allergy search on you AND keep masto in mind as well!!   Most doctors don't know or understand mast cell disorders and they are not up on the recent changes to the diagnosis, etc.  Dr. Schwartz is a member of the WHO committee that has established the diagnostic criteria of both Systemic Masto and MCAD.   So, Whitney, you can go to Duke and they can do a work up on you, but they can still miss the mark by a MILE!   In going to Dr. Schwartz, he will know how to cover all of the bases, be it angioedema, MCAD, true IgE allergies, an immunological disorder or some other related situation.  He will also know enough about carcinoid because you don't get to be THAT good without also knowing how to identify the differencial diagnosis!!! So, don't waste time, energy or money, got to VCU and not Duke.  This is what I would do.   Lisa

Title: Re: New & Hoping for a New Day Post by Avonlea on 04/05/11 at 23:44:54 Thanks, Lisa!  I love going to Middleburg.  I buy my pet food at the pet store there.  I live on the Loudoun side of Chantilly so it is only about 10 miles away.  Did you go to Foxcroft?   Oh, and I missed answering you before.  I am an import here.  I lived in Alexandria and Vienna about 10 years ago, then in Stuttgart, Germany; Tampa & Orlando, before returning here.  I grew up outside Chicago, where my father is from.  My mother is from Delaware, so I was out here quite frequently growing up. I assume that your husband took you to Brazil? I am not  going to Duke to get worked up, just for an event.  My allergist just said that I would be in good hands there, immunology-wise, should things act up.  Dr.  Schwartz sounds like the man.  Is there anyone comparable at NIH? Best, Whitney

Title: Re: New & Hoping for a New Day Post by Lisa on 04/06/11 at 08:36:06 Foxcroft!! HA!   Nope, we weren't upper crust enough for them!!  I went to Sacred Heart Academy back in the 70s when these kinds of prep schools were not considered the thing they are today.  It was a small school then, but it certainly had their "connections"!   One of my friends was Ridgely DuPont.  Yes, of THE DuPonts!  But that got totally lost on me and I had no idea of who the DuPonts were beyong that of the DuPont traffic circle within Washington cause that was one spot that the traffic announcers were always yaking about getting tied up with a ton of traffic!!   I only found out Ridgely was one of THOSE DuPonts after her parents divorced and she was sent off to Swizterland for Finishing School!!!!!     Kids are kids and most of them haven't the slightest idea of "who's who's" and nor do they care!!  In the DC area, everybody rubs elbows with the highs and the lows!  The Kennedy kids had the absolutely WORST reputations for being those who were most into drugs and trouble!!!  And although they didn't live in my neighborhood everybody really kind of thought it unfair in many ways cause Ted Kennedy's kids were forced to go to public school and this in the 70s when there was a LOT of trouble in the public school system.  So, they always got razzed about "slumming" since everybody knew that they were a rich family, and yet here they had to be around with some of the worst conditions!!  My sister went to Marshall Highschool in the Falls Church area, a public highschool.  This was the early 70s.  I was scared out of my wits to go there for they had race riots going on in the middle of the school!!  They had kids knifing others and open drug use and what a total mess!!   My family was Catholic and I openly said that I didn't want to be in a public school due to how bad they were then.  My parents were naive!  They only learned about drugs due to my other siblings who went to the public school whereas my other sister and I who chose the Catholic school got by relatively unscathed!!!   It's no wonder the Kennedy kids ended up the way they were - their parents raised them to be "examples" and I guess it wasn't until they matured enough to work some of that stuff out that some of them finally got their lives together!!!     I left the DC area when I went up to Pittsburgh to study at the Art Institute of Pittsburgh.  I lived there for about 10 years before I met my husband who was studying in Pittsburgh.  He's Brazilian and after 3 years he returned home and brought me with him.  We've lived in Volta Redonda, about 2 hours west of Rio de Janeiro for the last 23 years!!   Brazilians are wonderful people and I'm very happy here!! You live in the really pretty area of Chantilly!!!   Near Gilbert's Corner! hahaha!  Is it still just an old farm house sitting at the cross roads of two two-laned highway, or has that all changed?  Knowing the rest of Northern VA, I wouldn't recognize it all anymore!!!  It was ALL FARMS and FORREST when I was there!!  ALL OF IT!!   It sounds to me, Whitney, that you're either a military family or a government worker family to have bounced around so much.  Sounds like you've had a lot of adventures and seen loads of places!!  I hope life's been good for you too! Now, back down to masto....!  Ha!  Memory lane!!  See how dangerous it is to get me off the subject? The NIH is a MAJOR research center for masto!   Dr. Dean Metcalfe is one of the highest authorities and he has trained several of our best.  Cem Akin has studied under him, Dr. Robbins and others.  Right now he's working with Melody Carter and Dr. Todd Wilson.  They do have some research going on into anaphylaxis as well as mastocytosis.  Both of these are worth considering looking into, Whitney.  The anaphylaxis study may be easier for you've got to have enough evidence for the mastocytosis project.  However, the anaphylaxis project will do all of the testing looking for mastocytosis for that is what they believe that IA patients are in truth.  They've found enough evidence to support this suspicion.  So, it's a valid option if you have a doctor who will verify that you've indeed gone through anaphylaxis.   Oh, I see now what you 're saying about Duke.  Yes, you're in safe hands if you "explode" down there!!!!   Now, here's the thing - we have 3 major places you can go - Up to Boston, but that's limited to get into because they want you worked up for masto and some kind of verification of MC activation in order to get in there.  They are a mastocytosis research center now and so if you have anything pending or doubts about your case, that's not the place to go.  People who go there have ruled everything else out and everything seems to indicate masto.  The NIH is an option, but I think it's not always the best for they don't really become "your doctors".  They want to work with your doctors, but if the study ends or if you've got other issues outside of it, then, you're kind of stuck.  I have seriously considered going there but only as a last choice.   Schwartz on the other hand, is going to look all over the area since he's not concentrating solely upon masto even though that is his area of expertise.  He is an authority, yes, but, he's not set up a masto research center and so this is why he's seeing other patients who are still seeking answers and haven't yet pinpointed the disease.  He knows how to diagnose it and is an expert, but he will keep it in mind while he's ruling everything else out.   I've gone this route, Whitney, of having to rule out the carcinoid first.  I'm totally systemic and the suspicion of carcinoid was very strong. Since it's the more dangers of the 2 diseases, it only made sense to attack that first.  I found an expert in this in Rio for I had 2 oncologists saying that they wouldn't touch me with a 10 foot pole!  They said it was too tricky, Whitney for the tumors challenge even the best authorities, so you can't really go to any old oncologist for this.   However, I have one major question for you.....have you ever had a shot of epinephrine or used the epi-pen?   Your answer to this may be what helps to give you direction.  Let me know, and depending upon your answer, I can help you with things, perhaps. So, I'm waiting....!  :)

Title: Re: New & Hoping for a New Day Post by Avonlea on 04/06/11 at 09:37:27 Hi Lisa, The Mosby Highway area west of route 28 is very recently built up, but the build up stops just about where I am.  Aldie is still a little village. Yes, we are a family working for the USG, though perhaps about to be shut down!   ::) No - I haven't used the pen.  I had it sitting next to me on the bed 2 weeks ago, but the EMTs said we didn't need to use it.  It certainly appeared that my body was making enough of its own adrenaline at that point and my beathing & oxygenation was good. I have had epi in local anesthetics, though not for several years, as it made my heart race & made me jittery.  Same thing with ephedra products & topical anesthetics.  But the non-epi anesthetics bother me, too.  That's happened, in retrospect, since I was in my late teens.  I don't know how I got through all the junior high school age dentistry! I also have a small sliding hiatal hernia.  When I gulp down food & don't chew it - and am also not eating enough for whatever reason - it's like my body goes beserk trying to digest it.  Or is shocked by the need to digest it.  What happened 2 weeks ago was almost like what's called dumping syndrome, accompanied by the flushing and tachycardia.  So my allergist's advice to chew my food very well was worthwhile. Dr. Schwartz sounds like the one, then.  Thanks for his contact info.  My GP is actually on board that I need the carcinoid tests, but rather than just hand over the orders, she is now pushing for me to come in & see her, which I can't do today because I'm not up to a 60 mile round trip.  So we'll see if she gives me the orders anyway.  Regardless, if an episode happens at Duke, I'll tell them what I still need tested.  I've discovered that a doctor may discount a test result unless it was taken during an episode.  My tryptase was.  My pheo tests were done about 12 hours after a flushing episode. Thanks for your advice - the non-specialized docs have nothing on all of you, Whitney

Title: Re: New & Hoping for a New Day Post by Lisa on 04/06/11 at 10:39:12 Whitney, the purpose of my asking about the epinephrine is because this is an old test that doctors used to do in order to differentiate between masto and carcinoid before there were appropriate biomarkers for the two diseases.   You see, to a carcinoid patient, Epinephrine could put them into a heart attack and it will put them into Carcinoid Crisis.   This is not anaphylaxis, but I believe an even more serious reacting that anaphylaxis.  Yet, it will create a severe reaction.   The shakiness and tachycardia does indeed happen with epinephrine in some patients, but on the whole, the epi will turn the anaphylaxis around.   But it is well known to give those shakes.   So, if you didn't explode with epinephrine, then you are probably masto and not carcinoid.   You may not need to do anything more than the blood serotonin - 24hr 5HIAA and Chromogranin A CGA test, the diagnostic markers for Carcinoid.  If any one of these exams come out way elevated, then you have no choice but to find a carcinoid specialist oncologist and have yourself properly investigated. However, as to the blood serotonins, Dr. Dean Metcalfe of the NIH did a study not too long ago which showed that masto can elevate the serotonin levels in some patients.  But, on the whole, they don't go as high as a carcinoid patient, so an elevated blood serotonin is not diagnostic for carcinoid.  However, way below normal blood serotonins is indicative for masto for Metcalfe's work proved that mastocytosis is able to lower them way below normal levels.  Mine have bottomed out to the point that they didn't register!!!  This is masto! I'm going to send you some information on the hypertensive form of masto, Whitney, because I think that your doctor has gotten stuck in the same spot where my masto specialist did.  She kept running around in circles suspecting carcinoid until I freaked her out following gallbladder surgery 2 years ago.  I went through a week long of horrendous anaphylaxis following that surgery and she could have sworn it was carcinoid, so I ran to my oncologist and he had me run the CGA and 5-HIAA a second time around and when they came back normal and below normal he came flat out THIS IS NOT CARCINOID!! and she had to back down and rethink it!!   She's learned now and has no doubts, It's Masto and it's a rare variant form of it!!! Send the documents I'll give you over to her and let her digest them over the weekend!!  It will help her gain a grip on the hypertension!! Lisa Have a nice trip!!!

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