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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Does bad reaction to epinepherine means not Masto but Carcinoid?? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1308753426 Message started by kluesy on 06/22/11 at 03:37:06

Title: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by kluesy on 06/22/11 at 03:37:06

I have a very bad reaction to epinepherine or albutorol of any kind(severe tachycardia, and chest pain, nausea, shaking, shortness of breath, feels like I am going to die).

I thought epi was the fix for masto problems?

I am now starting to think this may be related to carcinoid or maybe I have both. I have chronic hives/swellings for 20 years, but just recently had an elevated Chromogranin A test which is a marker for NET or Carcinoid. I have had the dry flushing(wake up every morning with red cheeks and chest and now keep it all day) and nausea for three years now.

Also thryoid, adrenal failure and hyperadrenergic POTS(postural orthostatic tachycardia syndrome).... all developed in the past 6 years.

I do need zyrtec and benadryl every day or I swell with hives that last 2 days.

I am so discouraged, now I am worried this may be carcinoid....2 1/2 yrs ago I had a slightly elevated 5HIAA in my urine, had the octreotide scan(which was negative), so I kinda ruled out the carcinoid....now this test pops up elevated....don't know what direction to go.

What is the definitive test to seperate the two? (Masto vs Carcinoid)

Title: Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by Riverwn on 06/22/11 at 04:03:50

Hi Kluesy,
If you look under the thread here Specific Mast Cell Conditions and Those that Mimic Them you can get more information about those tests and conditions. I do want to ask you one specific question though. When you have a shock episode, do you go into cardiovascular collapse easily?? Do they have trouble getting an IV in you? Is that when your chest pain begins? If you have the vascular symptoms strongly when you shock, it might be that you also have Kounis Syndrome and Takasubo syndrome--This is not very common but it happens with some people who have vasculitis type symptoms with their masto Those people should avoid epi unless/until there is no other choice, because of the effects it has on the vascular system.

I am one of these people so I understand what you have been through and how you feel. Do you react ok to Predinisone? If you do, I would ask your DR about keeping an emergency prescription on you with your ER kit to take if you think you might be going into shock--it has helped me maybe 6 times, totally avoid shock and pull out of it.

You need to talk to your DR and make sure he ruled out any other condition. If that was done then you need to see a cardiologist who will understand the terms Kounis syndrome and Takasubo syndrome, for your protection.

The fact that you are reacting now just means, this summer is incredibly hot and most of us are affected by it--and have to take extra meds every day. Make sure you stay out of this horrible heat, keep cool, rest often, take whatever antihistamine helps you the most. You'll be fine :)

Just be aware and proactive for your health and you can live a totally normal life.

I hope this helps :)
Ramona

Title: Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by Riverwn on 06/22/11 at 07:45:06

PS... I STILL keep 2 epi pens with me at all times, I just wait to use them --If I am alone, I will use it IF I feel I am going to pass out before the EMTs get there... If they are already caring for me, I ask them to wait to use it and see how my body reacts to IV Benadryl, IV Zantac and IV Solumedrol.. Those will usually pull me through it just fine. If for some reason it didnt, then I would OK the epi pen use.
Hope this helps
Ramona

PSS.. IF you are still reacting every day, then you are under medicated and need to increase your meds until you stop reacting.

Title: Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by kluesy on 06/22/11 at 09:00:04

thanks Ramona for your reply!

When I have an episode I get very high heart rate,palpitations, high blood pressure, chest pain, start shaking, feel like I am going to pass out, nausea and abdominal pain, severe flushing, left side kidney area pain, increased urination and thirst. I do not have diarrhia which most carcinoid people do.

When I am tested at ER I am in sinus tachycardia with a mild left side diaystolic dysfunction, I also have PVC's.

It seems like I don't have enough blood cause when they try to take blood, mine stops after 3 tubes or so. They can usually get an IV in ok, but they go bad after a while and they have to start again.

I am starting to think I may have both Masto problems and carcinoid or NET(neuroendocrine tumors). I just need to find a good doctor to do tests to figure it out.

I am VERY sensitive to epinepherine and had a bad reaction to oral prednisone, but can tolerate hydrocortisone, solu-medrol, kenalog/celestone shot ok.

Most dr's say"Oh that is so rare", when I ask about testing for masto or carcinoid, but I already have two really "rare" issues being Addison's and POTS. I need a doc that won't stop until they figure it out.....most after one round of testing lose interest.
They like the easy 10min patient that doesn't require them to think.
sorry, not too happy with dr's right now.

Thanks for taking time to respond and for your encouragement!

Title: Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by Riverwn on 06/22/11 at 09:16:29

Yes, you need a masto expert quickly to see whats going on. Once you are stable, ask that Dr for a referrel to see a cardiologist who will see if Kounis syndrome and Takasubo syndrome apply to you. That left side diastolic dysfunction concerns me...The cardiologist will run tests to check that for you, like an echocardiogram. Things will be more peaceful once you get answers
Good luck Hon!
Ramona

Title: Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by kluesy on 06/23/11 at 09:44:59

Where will I find a good masto doctor? I live in Indiana.

I have already been to Vanderbilt (where I was diag with POTS) but that dr just said"Oh you would be much redder with mast cell problems" and did no further testing. I was kinda disappointed....thought they were the cutting edge people. Guess just for POTS only.

My theory is something is causing the POTS....and the endocrine failures, and the 20yrs of swellings......and if you get to the origin of the disruption maybe it can be fixed. Just having a hard time finding a doctor willing to keep looking.

Any suggestions?

Title: Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by Joan on 06/23/11 at 09:54:37

Starflower, on this forum, went to a hematologist in Little Rock at UAMS (U. of Arkansas Medical Sciences). Sometimes I've said to a doctor, "You're probably right, but let's go ahead and test for my peace of mind." I'm assuming you've been to an endocrinologist.

Good luck!

Title: Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by Riverwn on 06/23/11 at 13:35:00

I would look in the DR thread here on the board and you will see information for PA. state, theres a DR there who is an expert. They also have a great local support group and one of our members here, Kathie runs that.. you might want to PM her and she can help direct you to where they go.
Best of luck Gina, let us know what happens!!
Ramona

Title: Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by Riverwn on 06/23/11 at 13:36:52

I apologize for calling you by the wrong name--blame my brain fog LOL.. Please keep in touch and let us know how you are!
Hugs
Ramona

Title: Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by Ccc on 06/25/11 at 17:58:11

You could have a chromagranin A test done. I just had two small benign carcinoids taken out and the MD tested before the removal and will test after the removal. If it goes down, the assumption is that there was only those two. Then they do high surveillance of the site where they were taken from. The urine and scans, from what I hear, can be faulty in that the tumors need to be big enough. I'm not 100% sure so check it out.

Title: Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by Riverwn on 06/25/11 at 19:20:35

Ccc may be right, you should test for Carcinoid and a few other conditions to rule it out... but there may be another possibility here.

There is a syndrome with a specific group of people that I happen to fall into to.. and you might too. Its called Allergic Angina or Kounis Syndrome. The question is,
1) are you a shocker?
2) When you shock do you have vascular symptoms like angio edema (sudden swelling) problems with IVs and veins collapsing, and angina (chest pain) during the shock episode? If you took or were given epi, did you have chest pains after that?

You still need to test and exclude other diseases but if you go through that and it all comes out negative then I would suggest you read my other post on what happened to me and how to avoid it.

One step at a time. Get that testing done then we will know for sure. Im here if you need anything.

Hugs
Ramona

Title: Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by kluesy on 06/26/11 at 02:45:43

Thanks everyone for your replies!

It was the Chromogranin A test that was elevated. It was done in April,so maybe I can have it retested soon.

Yes, I do have severe chest pain when I have an episode. I don't swell unless I stop the zyrtec and benadryl or have a huge stress event then sometimes it doesn't stop the swellings.

I am so burnt out with dr's. I had my last endo stop practicing, so I had no one to follow up on an increasing single thryoid nodule that was causing me to lose my voice. Two years ago I had an endo suddenly pass away due to pancreatic cancer, so I tried to return to his practice and see the other endo there. Anyway this endo was horrible to me because I was on natural thyroid and had lots of testing.....he said"wouldn't you like to save all this money you spend on these tests?" I said" of course", he said, "Well just don't get them!" and then turned around and ordered more blood tests. Because I take natural thyroid meds(Synthroid doesn't work for me), he told me I was one of those people that just went from dr to dr until I got them to do what I wanted.....it was horrible.. I said "No, I have had one dr die, one stop practicing and one move away on me, yes I have had some dr changes so I have tried to keep my lab records myself(maybe that is why he got so mad, cause I brought my labs and scan records myself to him).

He was the one that ordered the Chromogranin A test because I was so red(flushed) and out of breath during the appointment. His letter just says to retest in 2 months and to followup with local dr's.

I won't see him again....it was a horrible experience. I go to dr's hoping for help and they just upset me more....I am already so sick, there should be a law against rude uncaring drs.

I want to do my groundwork and know I am seeing a decent dr. I can't take anymore dr's like I just experienced, I am too sick.

I have a naturalpath dr that maybe I can get to order tests. I am to see him Monday, so maybe I can start there.

Thanks for all your help.

Title: Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by Lisa on 06/26/11 at 14:00:01

Hi Kleusey,

I'm sorry I haven't stepped in here earlier. I tried but something else demanded my attention and I'm only now stepping in.

Kleusey, I wrote a big explanation of Masto vs Carcinoid to Ccc earlier and it most definitely applies to your case too.

It is not at all unusual for systemic masto patients to have to go through a carcinoid investigation. It takes on average a carcinoid patient 9 years to get a diagnosis due to how slowly the tumors grow and how gradually the symptoms come on. However, most carcinoid patients, by the time they show flushing, are in already a bad spot for it could indicate that their tumor has mestastized to the liver where the hormones are no longer being filtered by the liver and are dumping directly into the blood stream. However, some patients have their tumors in spots where they bypass the liver anyway and this is why they will flush. This flushing is the telltale sign for both masto and carcinoid patients and this is why so much confusion is caused. However, a bad reaction to epinephrine very well could indicate masto for about 20 or so years ago before they had a some good biomarkers for both diseases this was how they would differentiate between patients -they would provoke the flush with a cup of wine and then administer epinephrine. If the flush disappeared, it was masto, if the patient got sicker, it was carcinoid! Epinephrine can be deadly to a masto patient, which is why the ER should never administer epinephrine in any case of doubt as to the source for the flush!!

Ramaona's right, it could be Kouris syndrome, however, you MUST be fully investigated BY AN EXPERT for carcinoid. This is not a tumor which any old oncologist can track down for they can be extremely difficult to diagnose. Masto patients and carcinoid patients share some of the same markers like serotonin and histamine markers and yet carcinoid has some markers that a masto patient will not and vice versa. Yet a common oncologist won't know this. So, I strongly recommend that you seek out an oncologist who is a specialist in these tumors - not some Gastro, but a real SPECIALIST in Neuroendocrine tumors for those thyroid issues you are having could be a NET behind them. Without a specialist in these tumors, you have not had a proper workup. And I must say that you should never be the one to rule out any disease, your doctors should have done this for you. It is well known amongst the specialists in carcinoid that a normal chromogranin or normal serotonin test does not always rule out NETs for depending upon the location and the type, you won't have those positive markers. the urine serotonin marker 5-HIAA is KNOWN to have only 50% sensitivity. This means that 50% of the time it's going to be negative. And with Chromogranin, some masto patients are known to have elevated levels too.

So, you must go see a carcinoid specialist and NOT a masto specialist. I will go against Ramona's recommendation here for of the two diseases Carcinoid takes precidence especially when you've got a positive marker showing it. Of the two diseases Carcinoid is the more dangers and it's the more common, The chances are higher that this is what you have and therefore it only makes sense to go in that direction FIRST and then rule it out and after it's been fully and properly investigated and ruled out by the doctor, then can you move in direction of masto.

As to the likelihood of having both, masto AND carcinoid, it's just so ridiculously unlikely that no doctor will take it seriously. My explanation to Ccc will explain to you why. Could it happen? Possibly, but to date it has not been reported to have occurred as yet. So, let's not entertain that possibility as yet. I think that in Ccc's case, she can consider it since they have already found the carcinoid. I'm not saying she has it, I'm only saying that since the one has indeed been found, then if she can get the proper attention and fully deal with those carcinoids she does have and there still remains issues, a mast cell disorder could be considered as a possibility, but since she's not got everything fully dealt with as far as the carcinoids go, they must still be considered the culprits here - only after they are dealt with can masto be considered if anything is left over for again, the chances are so very, very slim of having them both together that no doctor will seriously consider them both together in the same patient. Mast cell disorders are extremely rare and there are perhaps only 200,000 - 300,000 patients in the entire US, so this tells you how very uncommon a mast cell disorder is. Then to put those very tumors which are the differential diagnosis together with that patient....well, this is why most doctors would just laugh you out the office!

So, in order to keep from having a doctor laugh at you, concentrate only on the one, the carcinoid, get it ruled out and then go securely in the direction of masto this way you won't lose precious time.

Remember, when we patients deal with medical investigations we have priorities as to what we must do in order to protect ourselves: We must take the worst possible threat as the priority and in this case, cancers always win! Seeing that carcinoid is a known cancer and can be deadly, you have no choice but must go in that direction and have a specialist work you up and rule it out. Then, you are free to go after other possibilities. However, one more thing - it is the job of the doctor ruling out the carcinoid to raise other suspicions of differential diagnoses. Once he can raise them, then you need to go in that direction that he's pointed you into, this is the responsible way to deal with these things.

Lisa

Title: Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by Riverwn on 06/26/11 at 16:58:26

I agree with Lisa and that is what I was trying to say.

Title: Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by kluesy on 06/27/11 at 12:43:56

Thanks for all your information and advice. I have had a sinking feeling inside ever since I got the elevated Chromogranin A test back.

I will let you know after I find a dr to rule out Carcinoid or NET.

I just hate dealing with drs....not had good experiences with them.

Title: Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by Sandi on 06/27/11 at 17:36:56

Kluesy,
Hello, forgive me if I repeat anyone, I come on often late in the evening when my brain and body are ugghhhhhh! But wanna throw an idea out that I don't believe has been covered. You may be allergic to the sulfites in the Epi not epinepherine itself. I believe it's in albuterol also but could be off on that. I've had some pretty severe reactions and chose not to epi because I really am pretty sure it will go more south when I try it. Some on here will say naaahhh won't happen. But I've sat in the DR's office and been told no way will you react and have severely. I know my body and sulfites are severe very severe for me. So far knock on wood I haven't epi'd. However there were a few I should have went to the ER to get prednisone and the other things I do tolerate. My medication toleration is absolutely rediculous. I am stupid stupid sensitive. Foods, chemicals, drugs, drugs are just rediculous. The last surgery I survived we ruled out all pain medications. Nothing like recouperating from surgery and reacting severly to pain med after pain med. I so know what you mean about not having it in you to see another "flake" It is infuriating after awhile especially with a mast cell disorder/severe allergic condition. Even with a top doc you still are having to tweak and discover what your personal mast cell disorder triggers are! I think most of us went through the carcinoid testing. Mast cell disorders aren't on many doctors radar. Even allergists. My guess is that's the largest group of doctors that we are all disgusted/frustrated with. Because they are the ones that should be treating us. Dr Akin before Boston was in Michigan, I'm trying to remember where!!! Deb and others will remember, anyway maybe that's not horribly far? Travel is a real nightmare for me so right now I'm pretty much self treating with an MD in my court and on board sort of.... I also take a natural thyroid. Nature thyroid, it is still an RX I don't know what that dum docs issue was. I was hypothyroid all the way back to the 80's and literally tried every brand out there synthetic, etc and couldn't tolerate many. Violently throwing them up. So I ended up just not medicating my hypothyroid. It was awful, i'd try armor again and throw it up. Finally I did nothing for years and weight has been an issue even with a seriously controlled diet. Finally I gave another brand a go about two years ago! Yessss! Finally one I can take! I've been horribly sick for a long time and it has been a mix of alternative and modern medicine that has kept me alive. I couldn't survive without my antihistimines! Also wouldn't have survived without many homeopathic (react to plenty still) natural remedies. Again in that world and the medical world not one specialist ever suggested taking antihistimines!!! I was so anti drug for so long and so sick!!!! When I first came across mastocytosis I couldn't believe neither realm had suggested it, I was practically textbook with exception to the awesome tryptase test! So I began to take benadryl in the evenings and would wake up feeling better and then went my journey to getting a handle on this everchanging beast!!! So I'm here to encourage you to keep at it, we are all so different in what we can tolerate, and try try try to only see an expert since you've already been through the wringer!! If you can make it to where Dr Akin was previously, I'm sure he has plenty of Dr's that studied for years under him still there! Ok I believe it was University of Michigan but maybe someone can clarify. I'm sure there are specialists there that worked with him!!! I'm sorry what you are going through right now, however! You've come to a place with similar doctor stories , misery stories, and also a lot of laughs and smiles. So vent away my friend, and you will be amazed at the knowledge from everyone here!

Title: Re: Does bad reaction to epinepherine means not Masto but Carcinoid??
Post by Joan on 06/28/11 at 07:29:04

Sandi might be right about people who trained under Dr. Akin, but be sure to ask for one of them if you make an appointment!