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Can You Tell Me How Do You Know If You
Question: Can you tell me how do you know if you have overactive Mast Cells Activation? I have POTS Syndrome and is extremely sick. I know POTS is associated with Mast Cells. I got sick back in April after an reaction to pain medicine in the emergency room. So, could that medicine caused overactive mast cells in my body?
Brief Answer:
Blood tests that check chemicals released in the case of MCAS explained
Detailed Answer:
Hello and welcome to 'Ask A Doctor' service,
To check for MCAS (mast cell activation syndrome) generally doctors look for an increase in the blood of certain chemicals that are related to mast activation. These are mostly methyl histamine but also prostaglandin D2, leukotriene E4, etc.
These are tests that are not done in all labs and there is a need for caution when it comes to storing, transporting and processing the blood samples for accurate results (the lab workers should be familiar with these tests and how they are conducted).
Mast cells are involved in an allergic reaction and maybe in the reason for the symptoms in some patients with POTS, but not in all of them. To associate POTS with MCAS the patient should have recurrent flushing, diarrhea, recurrent abdominal pain, cough, wheezing, nasal congestion (a few of them may be present).
If you have a few of the symptoms mentioned above then the blood tests may be indicated and the doctors may give you drugs that control the activity of mast cells such as antihistamines (Loratadine for instance) and even sodium cromoglycate, montelukast, etc. Improvement of the symptoms with such treatment is another indication that MCAS may be the cause of the symptoms and also POTS.
If you have MCAS (based on symptoms, blood tests and reaction to treatment) then it is likely that the medication you used in April could have initiated such a reaction with overactivation of mast cells.
I hope this answers your query.
I remain at your disposal in case further medical assistance is needed.
Regards,
Dr. Antoneta Zotaj
General and Family Physician
Blood tests that check chemicals released in the case of MCAS explained
Detailed Answer:
Hello and welcome to 'Ask A Doctor' service,
To check for MCAS (mast cell activation syndrome) generally doctors look for an increase in the blood of certain chemicals that are related to mast activation. These are mostly methyl histamine but also prostaglandin D2, leukotriene E4, etc.
These are tests that are not done in all labs and there is a need for caution when it comes to storing, transporting and processing the blood samples for accurate results (the lab workers should be familiar with these tests and how they are conducted).
Mast cells are involved in an allergic reaction and maybe in the reason for the symptoms in some patients with POTS, but not in all of them. To associate POTS with MCAS the patient should have recurrent flushing, diarrhea, recurrent abdominal pain, cough, wheezing, nasal congestion (a few of them may be present).
If you have a few of the symptoms mentioned above then the blood tests may be indicated and the doctors may give you drugs that control the activity of mast cells such as antihistamines (Loratadine for instance) and even sodium cromoglycate, montelukast, etc. Improvement of the symptoms with such treatment is another indication that MCAS may be the cause of the symptoms and also POTS.
If you have MCAS (based on symptoms, blood tests and reaction to treatment) then it is likely that the medication you used in April could have initiated such a reaction with overactivation of mast cells.
I hope this answers your query.
I remain at your disposal in case further medical assistance is needed.
Regards,
Dr. Antoneta Zotaj
General and Family Physician
Above answer was peer-reviewed by :
Dr. Arnab Banerjee
I feel like I have some type of overactive Mast Cells because I didn’t have POTS until after I received that pain medicine and Benadryl in the emergency room. Then I started having panic attacks and never got back right. Then I developed Pots. Before I went to the emergency room I wasn’t having problems eating, stomach issues, and I wasn’t very sensitive to smells and stuff. Every time I eat my stomach cramps very bad, I get a severe headache, and I feel extremely sick. Sometimes my blood pressure goes up high just after eating. I know with Pots you have problems with low blood pressure mostly but I have low and high blood pressure. Having high blood pressure when standing is called the hyperadregeneric Pots and I know this kind of Pots in more associated with Mast Cells Activation. I am having severe brain fog and I know this can be associated with Overactive Mast Cells Activation. My primary care doctor did a 24hr urine test and tryptase test and both were normal. I know these test can be normal but It doesn’t rule out Mast Cells Activation. Since these tests were normal my doctor think I don’t have overactive Mast Cells Activation.
Brief Answer:
Tryptase may be normal in some cases with MCAS- few other tests can be conducted in this case
Detailed Answer:
Hello and welcome back,
I understand your concern as it is true that POTS does not cause high blood pressure.
Tryptase levels are one of the chemicals that can be checked but should be checked 1-2 hours after an episode of symptoms (which I already mentioned in my previous reply).
Tryptase can be normal in some patients with mast cell activation syndrome and in this case, a 24-hour urine collection is done to check for methyl histamine, or prostaglandin D2 and its metabolite or leukotriene E4.
The collected urine needs to be refrigerated immediately after collection otherwise it may show normal even if these chemicals are raised. Blood tests to check these chemicals and their metabolites can be done as well.
Maybe you need to discuss with the doctor all the possible tests, that are available in your area, to evaluate MCAS. Sometimes, special knowledge is needed from the lab workers to handle the samples properly for a more accurate result. It is important to have the tests when you have the symptoms, otherwise, they will come out normal even though you may have MCAS.
Tests may need to be repeated several times, especially if they come out negative. This is because a patient may have MCAS and at a certain point in time the tests may come out normal.
So, one measurement of Tryptase at a certain point in time does not rule out MCSA as sometimes repeat measurements are needed and also other chemicals need to be considered in case tryptase is normal but the patient has symptoms suggestive of MCAS.
Finally, it is flushing with POTS episodes that raises suspicion for MCAS. Urine methyl histamine is the preferred test to diagnose MCAS in the terrain of POTS and anti H1 and anti H2 drugs (Loratadine and Ranitidine) and in some cases, methyldopa, are the most frequently used drugs to treat MCAS with POTS. The standard treatment for POTS, with beta-blockers, may make POTS in the terrain of MCAS worse.
I hope this answers your query and is helpful to you.
I remain at your disposal in case further medical assistance is needed.
Regards,
Dr. Antoneta Zotaj
General and Family Physician
Tryptase may be normal in some cases with MCAS- few other tests can be conducted in this case
Detailed Answer:
Hello and welcome back,
I understand your concern as it is true that POTS does not cause high blood pressure.
Tryptase levels are one of the chemicals that can be checked but should be checked 1-2 hours after an episode of symptoms (which I already mentioned in my previous reply).
Tryptase can be normal in some patients with mast cell activation syndrome and in this case, a 24-hour urine collection is done to check for methyl histamine, or prostaglandin D2 and its metabolite or leukotriene E4.
The collected urine needs to be refrigerated immediately after collection otherwise it may show normal even if these chemicals are raised. Blood tests to check these chemicals and their metabolites can be done as well.
Maybe you need to discuss with the doctor all the possible tests, that are available in your area, to evaluate MCAS. Sometimes, special knowledge is needed from the lab workers to handle the samples properly for a more accurate result. It is important to have the tests when you have the symptoms, otherwise, they will come out normal even though you may have MCAS.
Tests may need to be repeated several times, especially if they come out negative. This is because a patient may have MCAS and at a certain point in time the tests may come out normal.
So, one measurement of Tryptase at a certain point in time does not rule out MCSA as sometimes repeat measurements are needed and also other chemicals need to be considered in case tryptase is normal but the patient has symptoms suggestive of MCAS.
Finally, it is flushing with POTS episodes that raises suspicion for MCAS. Urine methyl histamine is the preferred test to diagnose MCAS in the terrain of POTS and anti H1 and anti H2 drugs (Loratadine and Ranitidine) and in some cases, methyldopa, are the most frequently used drugs to treat MCAS with POTS. The standard treatment for POTS, with beta-blockers, may make POTS in the terrain of MCAS worse.
I hope this answers your query and is helpful to you.
I remain at your disposal in case further medical assistance is needed.
Regards,
Dr. Antoneta Zotaj
General and Family Physician
Note: For further information on diet changes to reduce allergy symptoms or to boost your immunity, Ask here.
Above answer was peer-reviewed by :
Dr. Arnab Banerjee
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