Jump to content

Methylhistamine Test Questions


~Naomi~
 Share

Recommended Posts

Since MCAD keeps coming up and I do have a lot of the symptoms, I think I am going to ask my Dr. for the Methylhistamine urine test. I read that you have to wait for a flush before starting the urine collection. Is this necessary? Because I don't flush everyday and don't know when or where it's going to happen. So I'd be walking around with a urine collection container until a flush happened? Has anyone here done this particular test? Also, I read it only needs to be done for 4 hours - is that right or is it usually done for 24 hours? Thanks.

Link to comment
Share on other sites

Yep- you're right. I think 4 hours following a flush or a symptomatic episode would be great. I think it's good to wait approximately an hour post episode to begin. Keep your urine catch nearby.

I carry a serum tryptase order in my wallet. I'm supposed to have blood drawn post-episode. Instead, I go to bed B)

Good Luck!

Julie

Link to comment
Share on other sites

Post episode on the serum tryptase too. Serum tryptase was thought to be the end all & be all of laboratory determinants for ananphylaxis. NOW, docs are seeing with their own eyes, patients who clearly have anaphylaxis and still have normal serum tryptase levels. It has ultimately been somewhat of a disappointment in determining whether or not a patient has had an episode. Serum tryptase and methylhistamine are two of many mediators that are released when mast cells degranulate. They are extremely unstable- catching a high level is difficult :blink: .

Forgive me if you already know this- but I hope your doc has already checked your baseline serum tryptase. THAT is how mastocytosis is ruled out....for the most part. Our Jared, here, is a rare exception :rolleyes: (She has mastocytosis with normal tryptase.)

Let us know what you fid out!

Julie

Link to comment
Share on other sites

Hmm, sounds very tricky to get definitive lab proof on this one. So my understanding from what you said is that you need to have two blood tests for the Serum Tryptase? A baseline and then another one done after a flush - and then the two are compared? And serum tryptase is only for Mastocytosis? I don't think I have that, but possibly the MCAD -- which would be the Methylhistamine test right? Sorry for all the ?'s - just trying to understand.

Link to comment
Share on other sites

I asked Dr. Afrin this exact question and he told me it does not necessarily have to be done right after a flush BUT the chances are better that you will show elevated mediators.

I will tell you all there are 2 other women from here that I know in my area....we met through the meet others program. We're all really good friends and support each other. They both have normal tryptase, they have flushing, and I pushed them to get the biopsies and they have it too!!! One of them had a NORMAL urine methyl histamine done. Go figure.

Link to comment
Share on other sites

whoah, Jared. YOU are starting to make me wonder if this is contagious :D Your friends ALL had true mastocytosis w/o a high serum tryptase? You are all defying the odds greatly if the medical literature is to be believed.

Naomi, a serum tryptase should be done at any time to see if yours is high. If it is, you most likely have true mastocytosis, a very RARE illness....except for Jared & her friends B) Otherwise, the test can be used to determine whether or not you've just had an episode of anaphylaxis. Testing 30 to 60 mins following the episode is best in that case. You could do iy after a flushing epsiode of you'd like. it is a blood draw,

To check for MCAD, methylhistamine after an episode of flush is great as well as postaglandin D-2- both urine, both have to be kept cold until you get the urine to the lab.

Link to comment
Share on other sites

"They both have normal tryptase, they have flushing, and I pushed them to get the biopsies and they have it too!!!"

They both have what... Mastocytosis? Now here is another thing I don't understand. If the skin biopsy comes back positive, what does that mean? My understanding is that it means you have Cutaneous Mastocytosis - the skin form, but it doesn't verify systemic Mastocytosis. Is that correct?

Link to comment
Share on other sites

This gets tricky, but the cutaneous form IS mastocytosis and CAN be more than cutaneous....just ask Jared :blink: . Some, mostly children, have the cutaneous form & grow out of it. Some adults have the cutaneous form & it never goes beyond that.

The World Health Organization is reformulating diagnostic criteria now. There are many forms: systemic mastocytosis, indolent mastocytosis, cutaneous mastocytosis (including UP and TMEP), etc.

It is SHOCKING that Jared has friends with the same rare form that she has-the odds are astronomical. they are each one in a million (something like that :P ) & they are friends???

Julie

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...