More Questions About Mcad

[babettess]

Hi everyone and especially Mack's Mom ,

I have a few questions about MCAD and how it is diagnosed. I have checked the forum and found the answers to some of my questions, but not all of them.

As I posted before, I have had some spells that some have indicated could possibly be MCAD. (These spells started within 36 hours of starting Metoprolol.) About 5 times a week I get these spells where I feel like I'm being choked. I can take deep breaths during this time and I don't wheeze. I do cough alot during these spells and feel like my throat is full of phlegm. Sometimes my face gets a little red. My heart rate and blood pressure don't really change during these times, although after coughing my BP goes up a little but is still not really high. Other than roseacea on my nose, I really don't have any other skin involvement.

I have already had my urine histamine level checked and it was high at 141 ug. Normal levels at this lab are 13-62 . The lab report says the test is for Histamine Determination, Urine; and that results for this test are for investigational purposes only. It also says that total volume was not recorded and results were based on a 1000ml volume. I know my total volume was way less than that. So could this test have been inaccurate?

I just had my tryptase blood level checked (still waiting on the results) and I am doing another 24 hour urine histamine level in the next few days. My Nurse Practitioner is so great at checking out anything I ask her to check. She wrote the order for a 2 hour urine histamine, but our local hospital doesn't do anything but 24 hour tests. (They are a small hospital and have to send alot of their tests away.) So I guess I will be doing the 24 hour one again.

So my questions are:

Does a high 24 hour urine histamine level mean anything by itself?

Will the 24 hour urine show as much info as a 2 hour?

Should the urine test be a 24 hour histamine or 24 hour methylhistamine or is there a difference?

Will the test be accurate if you are taking antihistamines?

If my tryptase level is high will that mean anything definative?

What type of doctor diagnoses and treats MCAD? My ENT doesn't and my endo said that I didn't have mastocystosis because my HIAA-5 is normal and he left it at that.

Should I have any other tests done? I'm trying to have my NP order as many tests as possible now so I can have the results when I go to see my POTS specialist the middle of June.(In case he's familiar with MCAD)

What is the usual doseage of zyrtec and ranitidine and how often are they taken? I think I'm going to just try the meds and see if they help.

Thanks for all of your help and I apologize if I have asked something that someone (or even myself) has already asked before. Sometimes my memory isn't what it should be.

Babette

[juliegee]

Does a high 24 hour urine histamine level mean anything by itself?

It could be indicative of mastocytosis or MCAD.

Will the 24 hour urine show as much info as a 2 hour?

It seems to me that a 24 hour would be ordered IF the 2 hour was normal. Since your 2 hour was so high, a 24 hour shouldn't be necessary.

Should the urine test be a 24 hour histamine or 24 hour methylhistamine or is there a difference?

Everything I've read indicates that a methylhistamine is more accurate. With a histamine test, there could be more variables such as diet that could affect the authenticity of the test. That being said, a high histamine test MUST be investigated.

Will the test be accurate if you are taking antihistamines?

From what I understand, YES. The antihistamines work to protect tissues from the effect of the histamine. They do not lower the amount of histamine.

If my tryptase level is high will that mean anything definative?

Yes. You most likely have mastocytosis OR you just suffered an attack of anaphylaxis.

What type of doctor diagnoses and treats MCAD? My ENT doesn't and my endo said that I didn't have mastocystosis because my HIAA-5 is normal and he left it at that.

HIAA-5 measures the serotonin level. A high level could indicated carcinoid syndrome which MIMICS mastocytosis and MCAD. It could rule out carcinoid syndrome, but not mastocytosis and MCAD. The only doctor who can definatively DX MCAD is a masto specialist. If your serum tryptase is high, a masto specialist, an allergist or hematologist could DX mastocytosis.

Should I have any other tests done? I'm trying to have my NP order as many tests as possible now so I can have the results when I go to see my POTS specialist the middle of June.(In case he's familiar with MCAD)

A serum tryptase level, a urinary methylhistamine test (best done within several hours of an "attack"/severe symptoms), and a urinary prostaglandin D-2 test would be helpful. A clinical exam to check for flushing, dermatagraphism, and other skin abnormalities, chest sounds, spleen enlargement, etc, is very important. And, a detailed medical history, with special attention to HOW you react to H-1's, H-2's, and anti-leuketreines is as vital as the clinical exam and laboratory testing.

What is the usual doseage of zyrtec and ranitidine and how often are they taken? I think I'm going to just try the meds and see if they help.

It'd be great to have a doctor oversee your trial. That being said, the meds are OTC and quite benign. In the AM, I'd take 150-300mg of ranitidine and 10mg of zyrtec. In the PM, I'd try 25mg of benadryl.

Let us know what you find out, Babbette. I'm glad you're investigating this further.

Julie

[LindaJoy]

Hi, Babette,

I've been diagnosed with Mast Cell Activation Disorder. My urine histamine runs high normal. I was told that I could not be on antihistamines to get an accurate testing on this, but that was probably just one lab's opinion.

I must tell you that my dianosis came from Dr. Marianna Castells, in Boston, one of the top masto docs in the world. She based my diagnosis on history, symptoms, and some labs (urine histamine, skin tests, eosinophil levels, allergy antibodies, and IgE).

I do believe a 24 hour urine collect is better than a 2, simply because it provides more information, just IMHO.

I don't have answers to all your questions, but I'll give you what I've learned through trying to find a diagnosis for my mast cell problem.

Many people in my mast cell support group have never had a high tryptase level during their disease, yet still have a mast cell problem. I have not, myself, and still have MCAD. Tryptase levels are important in the overall picture, but definitely not the whole mast cell picture.

Uh, I don't want to contradict what your doctor has said about the HIAA-5 test being the definitive for mastocytosis. I had a bone marrow test to rule out Mastocytosis, but I still have a mast cell problem, yet my HIAA-5 is always normal.

An allergist / immunologist is the type of doctor to deal with mast cell issues, but honestly, you need to find one who specializes in mast cell diseases, such as Dr. Akin at University of Michigan, Dr. Marianna Castells at Brigham and Womens, Dr. Butterfield, at Mayo in Rochester (I've see all three), Dr. Miner in Oklahoma (masto - gastro doc), Dr. Bernstein at Univ. of Cincinnati (I've seen him too). Go to The Mastocytosis Foundation's website. There should be information there to help you in your search for a doctor, as well as lots of other information to help you in your journey.

About your symptoms. I also have Vocal Chord Dysfunction, severely, and it causes me to choke and cough. Have you been tested for this? This can actually be a pretty severe disorder and cause some pretty distressing symptoms. If you'd like to know more about it, I'll try to help if you email me.

About meds. I used to take Allegra, Benadryl (as needed) and have tried sooooooo many others for this disease. Once you get on the masto site, you'll see that there are a lot of meds that can be used for this condition, and really no two masto person takes the same medications--most take a combination and everyone has to find the right combo for him or her. I say I used to take these meds, but since being diagnosed with Addison's disease four weeks ago, I've had to stop all other meds and go strictly on hydrocortisone, which blessedly, is taking care of the Addison's AND the mast cell issues for me right now. Will that always be the case? Probably not, but I'm glad about it right now.

I hope this helps a little./ I've had MCAD my whole life, was born with it, and only just got diagnosed in February of this year, and I'm 44 years old. I really never pursued diagnosis before, until my symptoms got really bad (my doctor thinks the adrenal disease helped to advance the mast cell disease to where it's at now).

Take care and I wish you all the best in your journey.

Lindajoy

[juliegee]

Hey LindaJoy-

Did you have your urinary methylhistamine done at Brigham's and Women's? Did the lab or Dr, Castell's tell you to go off of antihistamines for the test? I had mine done there and I stayed on my meds. Just curious? You feeling better since the Addison's DX?

Hope so!

Julie

[babettess]

Mack's Mom and LindaJoy,

Thanks so much for your responses!!

I haven't had the 2 hour urine histamine test yet as our local hospital only does 24 hour urine. My order from the doctor is written as "methylhistamine level" but when the lab does it it comes back as histamine. Maybe I will specifically ask them to check and see if they can do the methylhistamine since it's better than just the histamine.

How sensitive is the histamine test to foods? The first time I had the test I wasn't given any instructions on a special diet and now that I've checked into the proper diet, I probably had a lot of the foods that I wasn't supposed to eat. Do the foods that you aren't supposed to eat increase your histamine levels?

Thanks,

Babette

[LindaJoy]

Hey, Mack's Mom and Babette,

Hmmmm..... think, think, think, which is hard right now with all the steroids and the Addison's going on. No, I didn't have the urine collect done at Brigham's, I had it done at St. Joe's, in Michigan, I think, and it was their lab person who said I couldn't be on antihistamines during the test because of one certain component of it. So, they didn't allow me to eat anything during the test because I kept going into angioedema every time I ate, and they couldn't give me anything for it if it happened (it would ruin the test, they said), so.... Just to not take any chances, I took no antihistamines and ate nothing (not due to histamine foods, Babette, just to avoid the need for antihistamines in case I should go into angioedema).

Yes, there are foods that increase histamine levels. Pork is a biggy, and I lived on that for a year. Spinach is another huge one. There are foods that either create their own histamine and bring it to you, to add to your load, or those that cause you to release a lot of your own in response to them. Either way, they're considered histamine-producing foods. If you google it, you'll come across lists of them. I don't know that eating them, if you're a big responder to them, will affect the urine test, but possibly. That's a good question.

You know, if you join the support group at The Mastocytosis Foundation's website, there are some people there who may know the answers. They talk a lot about histamine-producing foods there. Of course, Mack's Mom, here, is a plethera of information about all this, too. She's been very, very helpful to me!

About the Addison's, Mack's Mom. Feeling better? Hmmmm..... We at least know what's going on now, that's a good thing. I'm still having a heck of a time because it's all so new, I don't have an endo helping me dose my hydrocortisone (we have only one endo in our area and he's very, very textbook about this disease; ie, doesn't know a whole lot), and I'm on such huge doses of the HC and can't seem to bring it down without crashing, so...but knowing is a start and we go from here.

I've been asking questions of my old endo at the Cleveland Clinic (haven't really dealt with him for years, and he missed the diagnosis over and over, so...), but it's been like pulling teeth. Endos are truly an unusual and inconsistent lot to deal with, that's for sure.

Take care, all.

Linda

[babettess]

Hi All,

I just got my tryptase level back and it was 38.5. The normal range at this lab is 10 - 57. So hopefully that means no mastocystosis!! Now I just have to get the 24 hour urine methyhistamine done and see if it's still high.

Thanks for all your help with this.

Babette

[juliegee]

Hi All,

I just got my tryptase level back and it was 38.5. The normal range at this lab is 10 - 57. So hopefully that means no mastocystosis!! Now I just have to get the 24 hour urine methyhistamine done and see if it's still high.

Thanks for all your help with this.

Babette

Hmmm. Might want to keep an eye on that- unless your lab is VERY different from most. A serum tryptase level that is persistantly elevated over 20 ng/ml is consistent with mastocytosis. Look on The Mastocytosis Society Website for more info:

www.tmsforacure.org

Don't be alarmed, but certainly follow up. I hope you are seeing a good allergist to help to sort things out. As you get more unusual test results, you may want to see a masto specialist.

Best of luck- let us know what you find out.

Hugs-

Julie

[babettess]

Hi Mack's Mom,

I am beginning to wonder if I should even have the labs drawn at my local hospital. They actually ran a "TYPSIN" instead of tryptase test. So that's why the reference range was so different. I am awaiting a call now from the lab to see if they still have enough blood to do the correct test or if I have to go back in and have more blood drawn. I am having the tech who is helping me also make sure that the lab they use can run a Urine "Methylhistamine" test instead of the "histamine" that was done the first time. I am preparing to do my second 24 hour urine methylhistamine tomorrow so I am trying not to eat anything today and tomorrow that might mess up the test. Last time I did the 24 hour catch, I didn't know that I couldn't eat certain foods and ate whatever I wanted. Hopefully this time they can run the correct test we will be a little closer to some answers.

Thanks for noticing the problem with the reference ranges. I would have thought the test was normal if you had not alerted me to that. I will definately be following up on it. Some days I'm soooo tired of having to be my own advocate.

Thanks again for all of your input. I really appreciate all your help. I am going to look for a allergist to see as my current ENT "does not treat high histamine" so obviously he doesn't treat masto or MCAD. I live in such a small rural area that I have to travel to see any specialists. I was evaluated at CC and the dr. there knew my histamine level was high and yet when I got his letter of recommendations (8 weeks later) all he said was that I should see an allergist about my high histamine levels. I would have thought he would have referred me to someone, but he didn't. Oh well, I will try to find someone in the Baltimore area that maybe knows about masto/MCAD. Baltimore is a little closer than Cleveland.

MEDICAL POINTER (# 4786869 or whatever)- Always double check with the lab after they get your test results to make sure they ran the correct test.

Thanks so much,

Babette