Me And My Mcas--A New Diagnosis And A Few Questions!

[ophelialit]

Ok, well it's official--I am afflicted with the notorious MCAS! I'm quite fortunate to have found a fabulous immunologist who seems to understand every aspect of everything--seriously, this guys is like Yoda! (He also looks a little like Yoda and must be at least 200 years old). But, in all seriousness, he understands the human immune system unlike anyone I've ever encountered. In order to thoroughly review my billions of test results today, he took me into his conference room and spread out all of the documents, articles, etc. and went over everything meticulously for over an hour--who does that?! Fabulous!

So, I'm pretty overwhelmed, exhausted, etc., and I have a question for you peeps out there--does anyone else have elevated levels of Thyroid Peroxidase Antibodies or Thyroglobulin Antibodies in association with their MCAS diagnosis? My other thyroid function tests are all normal, but those two are through the roof which the doc assured me is to be expected with MCAS. Anyone else in that particular boat? Have you seen an endocrinologist? Inquiring minds want to know!

[anaphylaxing]

Don't have the elevated thyroid antibodies, but wanted to say so glad you're on the right track! Also would you be willing to post or PM me the docs name? Always good to keep tabs on docs familiar with MCAS as there are not many!

Keep us posted! What medications has he suggested?

[ophelialit]

Thanks for the response! I'm thrilled that someone FINALLY understands what's been going on with me for the past....ummm...forever!

Regarding the meds, I have to be honest....I was exhausted, drove through the CVS drive-up window, dropped off the RX's and told them I'd be back later this evening, so I haven't gotten a look at them yet. All I know is that they're a cocktail of H1 and H2 histamine-blockers and some Nasonex as well--I guess we'll see what's what when I have them in my hot little hands (there were four RX's in all).

The only lingering worry now is about these elevated thyroid antibodies--it looks like they're tied pretty closely to Hashimoto's, but, for right now, all of the function tests are well within the normal ranges.

Also, I don't mind posting the doc's name and contact info. at all--this is definitely a case of "share the wealth"!

Dr. Michael Mardiney, Jr.

http://www.mardiney.com/index.html

He's in a practice with his sons, and their professional profiles are pretty impressive:

http://www.mardiney....physicians.html

[sue1234]

I had numbers that were in the upper normal range, but don't remember any of the specifics. I've had my thyroid removed, as I had a bad case of Hashimoto's that would swell and shrink over the years. At the same time, I had a high-normal TSI (the antibodies for Grave's disease). I felt like I was always in a hyper and hypo pull with my thyroid. I had symptoms of both.

I now am on a maintenance dose of thyroid meds, but never feel like it is quite right.

[Katybug]

ophelialit,

Dr. M, Jr. is my doc, too! And, he is much like yoda and one of the best docs I've ever encountered. He's the one that got me on H1 and H2's and also figured out that we needed to retest my C4a which led to further dx of inflammatory connective tissue disease. He does know his stuff...he used to do immunology research back in the day at NIH. I'm so glad you found him! My favorite thing about him is that he never questioned whether or not I was telling the truth...he believed me from day one.

I haven't heard of the thyroid associated with MCAS. But, I'll have to start looking for any research out there on it because I am in a family full of women with Hashimoto's and Grave's. If I find anything I'll post it.

Katie

[DoozlyGirl]

Hello Ophelialit,

I am undergoing my second round of tests at MUSC to nail down my MCAS diagnosis according to the proposed WHO criteria. Several of my physicians,including Dr Afrin believe I have MCAS. One of the first "out of whack" laboratory confirmations I got was a TPO of around 1000. If I recall, the normal range is <50. I also tested quite positive for thyroglobulin, but can't recall the values. I was diagnosed as having Hashimotos and I was put on Armour Thyroid (natural desiated T3/T4 mix) and within days experience my first serious reaction --full blown anaphylaxis complete with an ambulance ride to the ED. Later on, I also reacted to Synthroid in multiple doseages. Until recently, we suspected the corn in the Synthroid was my issue, but now, I wonder if it isn't the dyes. I do tolerate Levoxyl in the 50 ug doseage, without FD&C artifical dyes, but react to the 75 ug tablets, which contain the artificial dyes. The dyes are known mast cell degranulators.

I've seen four endos, one who trained at NIH, one another who trained at Mayo, and another currently at my state's medical college. None of them know ANYTHING about mast cell disorders.

With all of the inflammatory mediators that are released during degranulation, autoimmune disorders are to be expected and one of the easiest to catch in semiroutine labwork is Hashi's. My allergist at the time, was the first to diagnose Hashi's in me.

What elevated markers do you have? Where were the labs done/performed?

Congratulations on getting this far. Best wishes on finding a regimen that works for you.

Lyn

[arizona girl]

I dont think I have mcas, but I do have hashi with normal tsh, lichen, undefined connective tissues disease and hypogamma. My cardio also ran labs that show I have homozygous mthfr gene, which means I don't have the enzyme that process folate and b12. It puts you at risk for cardiovascular disease, miscarriages, neural tube/spina bifida, and cancer. With this gene it is hard to process certain types of meds incuding the stomach meds like zantac.

I'm on 50 mg of synthroid for the hashimoto and it seems to be helping even though my tsh was normal.

So glad you are being heard and now treated. Maybe ask him to run the mthfr test on you to make sure you can process those meds.

[anaphylaxing]

thanks so much for posting the info. Good luck with the meds. If I could do it over again I would start one at a time carefully and see what effects they had so i know what i need and what I don't, not sure if that's what's been recommended to you. Keep us posted

[futurehope]

Opelialit,

Thank you so much for posting the docs name. I used to go to him for allergy shots, though I went to the father, and I think you went to see his son?

Anyhow, I am so psyched right now because maybe he can be my follow up go to doctor since I live in the Baltimore area. I was diagnosed at MUSC, but am on the lookout for local docs.

Which Dr. Mardiney did you see. the father of the son? Was it him that diagnosed you. Please do respond.

Thanks so much for posting, and I have MCAS and POTS as well. Hope to hear from you.

[futurehope]

@Ohelialit,

P.S. I know Dr. Mardiney as he used to be my allergy doctor and I received injections from him. But.............

his specialty is asthma and immunology. Dr. Afrin at MUSC, his specialty is hematology. They are different. Also, Dr. Afrin is a researcher in the area of MCAS.

How did you find out about Dr. Mardiney and that he has an interest in the MCAS, if you do not mind my asking? Was he your allergy doctor before? Just wondering. Thanks in advance.

@Katybug,

How did you find Dr. Mardiney and did he diagnose your MCAS? Thanks.

[ophelialit]

Hi futurehope,

I see Dr. Michael Mardiney, Jr. (he's the father of the group, and his sons are Michael III and Matthew) I hate to admit this, but I found him by accident after researching "old school" immunologists in the area who had published in the area of mast cell activation...so, I guess not totally by accident, but I wasn't referred to him by another specialist or anything of that nature. My mother, an immuno-hematologist by trade, had long suspected that all of my issues (IBS, interstitial cystitis, POTS, etc.) were immune system-related in some way, but she's been out of the biz for a while and didn't know what exactly it might be. It was her suggestion that I track down a true allergist/immunologist, so that's what I set out to do!

He did, indeed, diagnose me after the MOST thorough battery of tests ever--specifically, he took a great deal of time evaluating the Immunoglobulin E/IGE Serum levels which are, as I understand it, where the faulty activators of the mast cells reside. Luckily, Dr. M. has an office about 5 miles from me, so proximity and a great professional profile won me over. I had also been developing what I suspected were food allergies over the past several years, so I thought he'd be able to assist with me that at the very least....hope this helps!

[futurehope]

Ophelia,

I just spoke to Dr. Mardiney on the phone and when I asked him if he was familiar with MCAS, he answered that most allergy patients have mast cell involvement. That answer left me a bit unnerved because I took that to mean that he has seen anaphylaxis, which involves obvious symptoms, but not necessarily MCAS patients who can display many disparate unrelated symptoms without necessarily having anaphylaxis.

He asked me what my problems were, and I mentioned that I had several, too many to mention.

So, I may see him as a patient but I am totally insecure since I know my tryptase is 4.0 which is in the "normal" range. This normal result did not seem to phase Dr. Afrin, and he frequently sees MCAS patients and is familiar with their results. Dr. Afrin also seemed to think that my somewhat out of range blood cell results were frequently seen in MCAS patients.

So, what I am saying is.....I would be more than happy to see Dr. Mardiney since I live so close to one of his offices, but I still feel that Dr. Afrin sees more MCAS patients on a routine basis.

When you first contacted Dr. Mardiney, was anaphylaxis one of your symptoms? IOW, are you obviously having difficulties outside the norm of routine allergy doctors? Is your tryptase elevated? Did you have urine testing done for protaglandin D2 and histamine?

I just hope he understands "vanilla" MCAS patients like me without the obvious signs and symptoms that the usual physicians take note of such as anapylaxis and reactions to bee stings.

[ophelialit]

Hi there,

Dr. M does, indeed, tend to view people as "allergic" or "not allergic"--but, as he explained to me, there's a very broad spectrum within those two designations. So, people with MCAS are definitely "allergic" but not necessarily in any typical way. For instance, I do experience seasonal allergies and had begun to develop some suspected food sensitivities, but I had never experienced anaphylaxis in any way, shape or form (knock on wood). My symptoms were much more systemic with the GERD, IBS, interstitial cystitis, etc. He seemed to understand all of that and actually provided a very thorough explanation (complete with diagrams) about how mast cells can activate inappropriately and how the entire immune system can contribute to this misfiring.

I wouldn't say that Dr. M. is MCAS specialist or even that he specifically treats MCAS patients....but he did hit the nail on the head with me, and he prescribed a cocktail of Atarax and Tagamet after going to great lengths to explain the H1 and H2 entities. Hopefully, he'll be able to provide you some assistance as well, but I do understand being hesitant to work with someone who doesn't specialize in MCAS....best wishes!

[anaphylaxing]

I don't think you're going to top Afrin since he's a leading expert worldwide in the field, BUT to have someone local with even the remotest of interest and awareness of MCAS could be huge! What most of us are lacking. And if he's sorted out one or two of us complex people that is encouraging, rather than writing them off

That being said I know it is always nerve wracking and stressful to see a new doc

[futurehope]

Ana,

I am not "writing him off". I am really excited that someone local to me "gets it". But, in the back of my mind, I am aware that the two doctors are looking at MCAS from different perspectives. One is a researching hematologist, and one is an allergy-immunologist, who used to be my "basic" allergy doctor.

I was having an internal dialogue with myself about whether or not to continue seeing Dr. Afrin. I have seen him twice. I have a third appointment scheduled and my airplane tickets purchased for my upcoming September appointment. Also, as a sidenote, Dr. M does not take Medicare, which I have as a secondary insurance and Dr. Afrin does.

So, I already set up an appointment to see Dr. M, but I plan on keeping my September visit to Charleston.

Believe me, I am more than thrilled that somebody knows I am not being a hypochondriac, and that I indeed have many different ailments.

[Katybug]

Hi there,

Dr. M does, indeed, tend to view people as "allergic" or "not allergic"--but, as he explained to me, there's a very broad spectrum within those two designations. So, people with MCAS are definitely "allergic" but not necessarily in any typical way. For instance, I do experience seasonal allergies and had begun to develop some suspected food sensitivities, but I had never experienced anaphylaxis in any way, shape or form (knock on wood). My symptoms were much more systemic with the GERD, IBS, interstitial cystitis, etc. He seemed to understand all of that and actually provided a very thorough explanation (complete with diagrams) about how mast cells can activate inappropriately and how the entire immune system can contribute to this misfiring.

I wouldn't say that Dr. M. is MCAS specialist or even that he specifically treats MCAS patients....but he did hit the nail on the head with me, and he prescribed a cocktail of Atarax and Tagamet after going to great lengths to explain the H1 and H2 entities. Hopefully, he'll be able to provide you some assistance as well, but I do understand being hesitant to work with someone who doesn't specialize in MCAS....best wishes!

Futurehope - I would agree with the above assessment from ophelialit...in fact, I think Dr. M. had almost the same conversation with me verbatum. But, I don't exactly have MCAS...I have extremely elevated C4a (anaphylatoxin/inflammatory marker) which is known to degranulate mast cells. I get the same symtpoms as MCAS, but, my issue is coming from upstream of my mast cells. I have soooo much C4a in my system, that I degranulate mast cells constantly and with no shut off switch. I also have severe atopic allergies. But, what I really like about Dr. M is that he really is more concerned with controlling the disease process than labeling it if you have some fuzzy gray area type diseases like we have. None of my labs show MCAS but if you read the early notes from my office visits with Dr M, he flat out says that I was being put on H1 and H2's to control mast cell activity. He has since added the inflammatory connective tissue disease based on some of my labs.

I was referred to him by my PCP (who works in the same building with Dr. M, at Dr M's "Overlea" location on Belair Rd.). I asked my PCP about MCAS and he said Dr. M was the guy to see because he's brilliant. It had been a long time since I had heard that kind of sterling referral from one doc about another, so I jumped on it. So glad I did.

[futurehope]

Ohelialit, Katybug,

Hi, all, from a fellow Baltimoron, I mean Baltimorean. You realize we all have unusual medical issues and have found doctors that help? Yay!!!

I have been on Atarax, or Hydroxyzine HCL (the generic, I think) for years. It is the only thing that really helps my IC, but not perfectly.

I do have an appointment with Dr. M. I live so close. Its great. I'll see what he says.

I have been taking 1 200 mg tagamet/day, but am unable to go up to 2/day. I got headaches.

The Hydroxyzine HCL makes my restless leg syndrome worse, and makes me very tired and presyncope at higher doses. I'm still experimenting with increasing. I had been on 50 mg at night, but Dr. Afrin wanted me to take some in the AM as well. That is not going well. I'm also on 1/2 5 mg tablet of xyzal in the am and the pm. So far so good with that. I'm a work in progress.

I am so grateful for these bulletin boards where we can share experiences. It is very helpful.. Maybe we'll meet someday. Take care.

[Katybug]

I'm gonna have to tease Dr M that he's getting all kinds of good press. He deserves it.

[ophelialit]

Hi guys! Sorry for my absence--I've been doing that "working 24/7" thing again....note to self: stop doing that! I'm glad so many of us are close enough to benefit from Dr. M's knowledge....and he's a such a character, it's a pleasure to go see him!

I haven't been able to start the meds yet because I anticipate the Atarax really knocking me out, and I have had multiple early-morning meetings this week for which I actually needed to be awake...and alert. Well, mostly, anyway! Next week should start a much slower and easier pace, and I've actually been able to talk my supervisor into allowing me to telecommute 3 days a week starting August 1st--WHOOT!

Hope you guys are all doing and feeling well--hot enough for y'all??