Radiation treatment as a trigger for Mast cell disorders

Hi David,

I think my problems with mast cells started in childhood (unexplained episodes of fainting, vomiting, etc...), but I didn't start having anaphylaxis until two things happened: 1) the birth of my third child (which was an extremely stressful pregnancy because my second child died in utero), and 2) the beginning of treatment for hypothyroidism... my TSH was sky-high (Hashimoto's disease).

My case is a little different from yours, however.  I don't have UP and I seem to have a normal amount of mast cells (my baseline tryptase and urinary histamine are normal).  On the other hand, my immune system is making tons of antibodies to the high-affinity IgE receptors on my mast cells.  This is an antibody that commonly shows up in people with chronic urticaria... which I've never had.  So... I'm the category of MCAD (also known as idiopathic anaphylaxis).

Hi starflower

Thank you so much for your information.

I have been looking at potential triggers for some time now but quantifying and qualifying a relationship between certain traumas and mast cell disorders is almost impossible.

Then one has to ask- if it is determined that there is a relationship between lets say thyroid problems, sudden stress or trauma and mastocytosis then what can be done about it? Isn’t it just our bodies reacting negatively to the things that happen to us in life?

We cannot determine if an individual has a propensity to react to an event in the form of acquiring this debilitating disease but there may be hidden ‘markers’ that we can identify and then respond to accordingly.

In my own case predetermined actions have helped me in certain situations. Knowing my disease, gives me a huge head start in assessing and treating anatomical responses.

For example. Under stressful situations all classic Masto symptoms manifest themselves i.e. UP eruptions, welting, diarrhoea, low BP, blocked nose and so on. Now if I know that I am going to be in a stressful situation I ‘head off’ these symptoms with HIH2 blockers.

The problem of course is that generally we cannot predict the onset of a stressful situation.

I feel it’s important to swallow H1 & H2 blocker with a huge glass of ‘sense of humour’.

Hi David,

The thyroid issues are tough to sort out... Hashimoto's is a very common autoimmune disorder and it shows up in about 25% of patients with chronic urticaria.  That doesn't mean it CAUSES mast cell disorders.  I decided to stop going to any more websites about thyroid disorders because too many people seem to have the impression that if they can just get on the "right medication" (i.e. Armour) all of their problems will go away. 

On the other hand, the thyroid is responsible for a lot of important functions.  It's a shame that most doctors think of Hashimoto's as a localized autoimmune disorder, because the effects are systemic... joint pain, constipation, infertility, depression, feeling cold all the time, dry skin, etc...  In my case, I wonder if treating my thyroid disorder made my problems with mast cells worse, because one thing the thyroid does is regulate the production of reproductive hormones.  Estrogen is a known mast cell degranulator.  I have other triggers too (heat, exercise, cheese, seafood, etc...), but my symptoms definitely get worse at certain times during my cycle. 

I'm with you on being prepared!  I'm just not sure there's a simple answer.  Classic mastocytosis... having too many mast cells... seems pretty straightforward, but what makes a person with a normal amount of mast cells go into anaphylaxis when other people don't?  Even the top researchers don't know.  I've been watching DVDs from the 2009 TMS conference and Dr. Theoharides asked this very question.  I'm smart... but if he doesn't know, there's no way I'm going to figure it out!  My PhD is not in medicine or any of the hard sciences ;)  I've been through some hard things, but my mom (who shared 50% of my DNA) has been through even worse things... and she's never had an episode of anaphylaxis!  These disorders are quite the puzzle.

I'll toast to you with a shared cup of humor,
Heather

Hi David,

Welcome to the forum :)

Currently I'm diagnosed as having chronic idiopathic urticaria (CIU), anaphylaxis and severe angioedema. I've been trying to get a more accurate diagnosis but that is a long story, you don't need to hear all of that.

A brief snapshot into how this started for me was I had a tooth infection. My GP prescribed Keflex. Within approx 24 hours of taking the keflex an intense allergic reaction began. Everything was swollen, itchy and I felt weird. I must say here that I was so swollen my arms looked like they'd been broken and reset. I stopped the keflex, tried doxycycline... heart started going really crazy. Stopped that also. I thought #**@%! the antibiotics pull the tooth out..... and it healed fine.

It was discovered in my childhood that I had mulitiple sensitivities to most antibiotics. My GP felt that "well allergies as you get older can change". When I got my hands on a MIMs keflex is contraindicated for those with allergy to penicillian. That doctors neglect in regards to childhood allergies led to where I am today.
Firstly it started with urticaria on my extremities. I thought nothing of it as I never got sick, I assumed they were bites or something. Then I noticed a growing fatigue and terrible heart irregularities. Still kept ignoring it, I put it down to a virus..... until taking aspirin for a rheumatic fever and WHACK. anaphylactic shock. Since then life's never been the same.

The doctors I see don't believe the keflex and doxycycline bought this on they think it was the tooth infection. It's very difficult to argue this point with them. It could have been a combination of both, but I seriously doubt it. I've had a few tooth infections before and never have they induced global body angioedema or itchiness. Some times admitting that their medicines make us sick is hard for them to accept, it flies in the face of their ideologies.

Whether someone is predisposed or primed to MC disorders (family history of multiple sensitivities etc) and then a triggering event occurs that sets off a cascade of systemic meditators enabling a "disease state" to manifest is a really very gray area. As Star pointed out even the most progressive researchers struggle to understand much of the symptomatology when it comes to MC disorders.

I do believe though that in the next decade the psychoneuroimmune systems will be blown wide open and at the forefront of this new frontier with be mast cells and the histamine system.

When you talk of research do you mean your own personal research or institutionalised research?

I also raise my glass of water and antihistamines in humor
Cheers!

Hi David,

I'm sorry, it's taken me a couple of days to pop in here and read your post, but I have a situation very similar to yours.    I can trace a PRECISE LINE of Before/After in my case.   In Jan 2007 I went into surgery for a hysterectomy.  I was 46 at the time and a mother of 3 children and I enjoyed WONDERFUL HEALTH!!   I've never been alergic to ANYTHING except detergents on my hands.  I took every medication without problems, I could swim and hold my breath underwater for over 100 meters, I could run, ride horses, break a sweat, eat any foods I liked and never had any real physical ailmentes other than very very light asthma that only showed itself if I'd run 10,000 miles in 5 seconds flat or with a cold. The only other problem were fibroid tumors which is typical with many women especially my age, so nothing seemed a big deal.  The only thing that tipped me off that something was "up" was that in the year prior to my surgery I had about 5 cases of giant hives that covered my body. They were idiopathic and I could never tie them to any kind of trigger.  The only other clue was that I was feeling fatigued, so the when I'd breath in my "lungs" hurt.  Yet I was going to university - night school and working during the day so I figured, 46...makes sense!  I went to my doctor he did a few tests, everything normal, so I promptly gave it over to my being in college again.  

SURGERY COMPLETELY CHANGED MY BODY!!!!   To the point that I constantly tease my gynecologist that he's played Frankenstein with me!!  I keep asking him where he hid my body so that I can have him take this battered one back!  Yet it's only because I can't find the stupid scar on my neck, that he was too good as a plastic surgeon that I can't take him to court over it!hahahaha!

My body changed literally overnight to the point that while I was still hospitalized, 2 days after surgery itself, I had my first allergic reaction to IV pain medication.  I broke out in hives all over and the nurse had to go running after medicine to counteract it!  A week after I got released I was back in the hospital in the ICU because I'd had my first anaphylactic attack - they thought it was a pulmonary embolism cause they didn't know that anaphylaxis can happen with hypertension.  It was an incredible ride to figure all of this out!   But when finally we had ruled out the carcinoide syndrome, which is a tumor that presents with the VERY SAME symptoms as masto, and my ANA test returned positive, I knew it was Masto then and so I decided to ask a researcher as to if this is possible to have surgery kickstart it and why.

I wrote to Dr. Cem Akin who replied to me that YES!  Surgery can indeed wake up the dormant disease.  He said that either the medications of anesthesia can do this or the trauma of the surgery itself will do this.   In my case, since it was major surgery it was very likely that it was the physical trauma that went on with the hysterectomy which brought the disease out of hiding.

I have become so very sensitive to medications that even the effects of medications will trigger me - ex: medications like laxatives and blood pressure meds that bring down my pressure too quickly - these things create internal shocks to the system and this is what will trigger me long after I took the medication itself.   I have had several cases of excercise anaphyalxis.  I can no longer hold my breath and anything that causes my normal breathing to be either extended or shortened will also trigger me.  I've tested IgE negative to everything that I'm reacting to like chocolate, tomoatoe paste, cheeses, etc. and the other day I think it was some ginger that put me into hyperspace the other day, Contrast injection will throw me into a prolonged syncope and any kind of invasive procedure will cause not only the syncope but it and the constrast will cause weeks of reacting thereafter.  Everything they do to me must be done in the hospital and specifically in the operating room just so they can respond with all their equipment if necessary!  I've now got a bunch of totally freaked out doctors in my small town who are just amazed and in a sense I've become "the talk of the town" amongst the doctors for I'm the only case they've ever seen and they've never heard of anyone like me before!

David, my case appears to be showing itself as autoimmune, a true autoimmune.  However, this is only a suspicion even amongst the researchers and if you will speak with Nancy Gould who is an American nurse who is also an SM pacient and a lay researcher she can tell you that although Masto has been investigated purely within it's neoplastic form, there are cases like mine, far and few between mind you, which will favor this suspicion.  It's just such a rare disease, however, that there are not enough of us in the hands of the researchers for them to really formulate honest theories about this.  And besides that, how to they prove it if they only know how to diagnose the neoplasm?  This is also part of the quandry for all of their efforts have concentrated upon the neoplasm so that they can find cures and answers for those of us who are most threatened by this disease.  So, in order to save the lives of some, there's a bunch of us who must be ignored.  However, theres a consensus meeting coming together this coming year and they are finally going to sit down and agree as to how those patients who fall outside of the neoplasm are to be diagnosed and in this group perhaps they may raise the question of autoimmune, who knows.

Yet, regardless of this there is still this aspect of the event being able to be linked to a before/after appearance of the disease.  It seems to me that you're well up on the disease.  So let's just take it from that point there.  If we look at a mast cell disease in it's very basic form, that of the mast cell itself, we know that it's a white blood cell that's got all kinds of censors and things that can trigger them.  Yet, what exactly makes it disarm and sensitive in the first place is the question.  I, myself, haven't gone that far into the research, but the fact that it's like a Jack-in-the-box, and is armed already to be set off is important here.  Somehow, David, in cases like yours and mine, whatever it is that caused the music to stop and make old Jack pop out is the question!  Why did our music stop?!  Why did Jack pop out when he was so quiet and content inside his little box?  I think that in cases like ours that this is the major question - there's something there which obviously is in control of this mechanism and in our cases it was all working until.....POP!!!    I too have wondered about this and wish I knew the answer for it's certainly a very interesting mystery and I'll bet you ANYTHING that the researchers would love to know this too!

I hope I've helped!    Lisa

Hi David,

Welcome to the forum.  The first time I had a possibly mast-cell related symptom was after surgery, a myomectomy (removal of uterine fibroids).

I reacted to the post-surgery morphine by having trouble swallowing.  Not life threatening, but very uncomfortable.  I had never had trouble with allergies or medications prior to this, but I never took much in the way of medications. Once I was home from the surgery, I also had a sensation of numbness going down my arm or arms for the first time ever.  It concerned me enough to call the doctor who had no answer for it.  That later became a recurring symptom for me.  For the next few years, I had various mild symptoms occur occasionally.  My symptoms did not come on strongly until 3 years later when I had a major gastrointestinal event that seemed to be due to either a gut infection or food poisoning.  I don't know for certain if this was related to mast cell issues or microscopic colitis - I was dx'd with mild microscopic colitis a few years later (but that can be connected with mast cells too).

I don't have a dx. for a mast cell disorder.  I just have had weird symptoms for many years and this year had elevated serum tryptase (22.5), which is now 16.5 after six months of treatment with gastrocrom.

Did the surgery trigger something?  I don't know.  Could be.  I have subsequently reacted to other histamine-liberating substances in drugs like benzoates and I had a strong meltdown after taking I.V. EDTA.  Whether I was sensitive prior to surgery, I don't know because I rarely, if ever, took medications.

Faith
http://mastcellsandme.blogspot.com

Faith this is what happened with me and if you check out high histamines on Google and see all that high histamine levels cause in us then you will begin to see the connections of your own symptoms.  Besides, high triptase levels are ONLY produced by mast cell disorders.   You may not have a Mastocytosis diagnosis, because that is purely restricted to those fulfilling the WHO criteria for the neoplastic form of the disease, but in having that high tryptase you have fulfilled ONE of the criteria for that diagnosis, which means that you would be diagnosed as MCAS as according to how some of the researchers diagnose their patients   We'll all know next year when they reconveine to address the MCAS diagnosis in their consensus meeting, but the chances are that you, just like me, because we have indicators that there is indeed some kind of mast cell activation going on, will have the MCAS diagnosis.  Everybody is on the edge of their seat wondering how that meeting will come out and what fruit it will produce, but it gives hopes to us with an "unofficial" diagnosis for something more concrete.   Here's to hoping!!!

Thanks Lisa.  Thanks for your encouragement. I'm sure I have mast cell activation because I've had so many histamine-type symptoms, mild elevation in serum histamine, and the tryptase levels.  I just don't know WHY!!!!!  I guess the doctor's don't know why either.

David - Another trigger possibility in my case is reactivated Epstein Barr virus.  But hard to know what came first, EBV or too many mast cells.

Faith
http://mastcellsandme.blogspot.com

Well, Faith, welcome to the crowd kiddo!   Dr. Castells gave me an MCAS diagnosis due to my high histamines and pathological findings, but as my dermatologist loves to ask me....WHERE IS WALDO?!    ahahaha!  She's pulling her hair out with me cause she's not accustomed to not finding the neoplasm.  She's got mainly UP patients and they're easy to diagnose.  But it's those of us who are systemic that are the trick!  And she didn't know about the MCAS diagnosis!  She's never heard of that and of course if you can't find the diagnosis in a medical book somewhere then you really aren't dealing with a "real" disease, are you?!   
 
Faith, my husband has also been having a hard time with this because in the beginning it was always and issue of "what do you have?" and since we jumped from one doctor after another and nobody could identify my symptoms he began getting a bit paranoid for the last thing he wanted was for us to go through an investigation and then start back at zero with yet another.  When I researched it enough to know that the high histamines, high tryptase and high prostaglandine levels are ONLY connected to mast cell disorders it gave me a lot of peace.  If you were in Dr. Castells hands she would diagnose you as MCAS.  Manuella, who is canadian went to Dr. Castells and this was her diagnosis due to the fact that she showed high prostaglandines but not high histamines nor high tryptase.  And when my dermatologist got a bit freaked thinking that I was indeed a carcinoid patient and she made me run back to my oncologist and we retested the carcinoide markers, I also decided to speak with Dr. Metcalfe about all of this regarding the histamines and seratonins.  He gave me the outline of how they work in regards to mast cell disorders.   The histamines are really an excellent marker for masto for nothing else will drive the histamine levels up so high as masto.  You could NEVER eat enough histamine rich foods to drive your levels up that artificially!  The histamine levels could be diagnostic of masto if it werent that you could find them present in the basophils and eosinophils as well.  This is why they aren't dignostic.  However, there's no other disease out there which will put your histamine levels that high.   So, if I can help you find some peace, you can rest your concerns that you are not dealing with some other mystery illness.  Those high histamines point the finger at a mast cell disorder and unless you had eosinophilia, which I don't think can raise the histamines levels high enough without first showing that you had an overload of eosinophils in the first place, you at least can feel content that as long as your doctors keep treating you  as masto and keep trying to find those mast cells, which hopefully they won't find, then you're doing ok.  Frustrated, but OK.
 
But if it's any comfort to you, you're in good company, for there are many of us who fall outside of the WHO criteria and who are driving out poor doctors absolutely BONKERS!