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

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

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

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

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

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....!  

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!!!