I recently got a positive result from a 24hr catecholamine and total metanephrines test which is suspicious for pheo/para. My doctor had a CT scan of the adrenals ordered which came back clean, so now we has ordered a full body MIGB scan which is pending. I am at Northwestern Medicine, but am also reaching out to Mayo in case this becomes a very rare and difficult thing to treat. My main question at this time is about the catecholamine results. All three hormones came back elevated, but dopamine was truly off the charts whereas the other two were only slightly elevated. Has anyone else had this happen? Reading about it, it seems that predominantly-dopamine secreting tumors are more likely extra-adrenal, which mine is since the adrenal CT came back negative, and more likely to be malignant. I have only had pronounced symptoms of catecholamine excess for about one month (my docs are moving VERY fast for which I am very grateful), so I am hoping if it is malignant / more likely to become so, that we might be catching it early. The only other question I have is that if is not in my abdomen, and it is symptomatic, it seems from the literature that it is less likely in the head and neck region, so could it maybe be in my chest? Anyone have experience with that?
For background, here are my symptoms:
For a few years I have had tachycardia and chest pressure after really hard exercise, but didn't think a lot of it (until now). For the last month, I have had increasing number of episodic spells which include: tachycardia, blood pressure spikes, anxiety attacks, sweaty/clammy feet and hands, severe tingling and cold in hands and feet, dizziness upon standing, and constipation. One time last week I had twenty-five minutes straight of whole-body tremor. I have visited the ER twice and both times, all labs came back normal. Because my brother died of sudden death due to hypertrophic cardiomyopathy, they also checked out my heart extensively and said it is not damaged in the slightest; I have received echocardiograms every five years of my adult life and nothing has ever come back abnormal. I have been incredibly healthy, very active, and have never had hypertension or any other ongoing issue. The only other thing I have ever been tested for was enlarged lymph nodes in my neck; I had an MRI four years ago that came back negative and they suspected my lymph nodes were swollen because of COVID shots, which apparently happens in some people. They are still swollen all these years later but have not grown or changed at all.
I recently got a positive result from a 24hr catecholamine and total metanephrines test which is suspicious for pheo/para. My doctor had a CT scan of the adrenals ordered which came back clean, so now we has ordered a full body MIGB scan which is pending. I am at Northwestern Medicine, but am also reaching out to Mayo in case this becomes a very rare and difficult thing to treat. My main question at this time is about the catecholamine results. All three hormones came back elevated, but dopamine was truly off the charts whereas the other two were only slightly elevated. Has anyone else had this happen? Reading about it, it seems that predominantly-dopamine secreting tumors are more likely extra-adrenal, which mine is since the adrenal CT came back negative, and more likely to be malignant. I have only had pronounced symptoms of catecholamine excess for about one month (my docs are moving VERY fast for which I am very grateful), so I am hoping if it is malignant / more likely to become so, that we might be catching it early. The only other question I have is that if is not in my abdomen, and it is symptomatic, it seems from the literature that it is less likely in the head and neck region, so could it maybe be in my chest? Anyone have experience with that?
For background, here are my symptoms:
For a few years I have had tachycardia and chest pressure after really hard exercise, but didn't think a lot of it (until now). For the last month, I have had increasing number of episodic spells which include: tachycardia, blood pressure spikes, anxiety attacks, sweaty/clammy feet and hands, severe tingling and cold in hands and feet, dizziness upon standing, and constipation. One time last week I had twenty-five minutes straight of whole-body tremor. I have visited the ER twice and both times, all labs came back normal. Because my brother died of sudden death due to hypertrophic cardiomyopathy, they also checked out my heart extensively and said it is not damaged in the slightest; I have received echocardiograms every five years of my adult life and nothing has ever come back abnormal. I have been incredibly healthy, very active, and have never had hypertension or any other ongoing issue. The only other thing I have ever been tested for was enlarged lymph nodes in my neck; I had an MRI four years ago that came back negative and they suspected my lymph nodes were swollen because of COVID shots, which apparently happens in some people. They are still swollen all these years later but have not grown or changed at all.
I'm bringing in @vkoonz@larak@gsm13161@coachv and others into this discussion to share their experiences with diagnosing a paraganglioma and testing with you.
@megtrich, you mentioned that your team is moving quickly. Do you have any update? Will you get a second opinion at Mayo Clinic? How are you doing?
Well, 6 days after having the paraganglioma removed, very happy! We traveled to Tampa on the 9th, and went to the hospital on the 10th, very early, 5:30 am. The facility is very well run, from front desk, check-in, the pre-op area, all the staff is capable, friendly, willing to answer any questions. The facility is only 3 years old, all equipment is top of the line. A CT scan is done to get a current pic of what is going on. My 10th surgery, I've always enjoyed the "happy juice" they give you to relax you, it's the old hippy in me. I don't know when they slipped me something, all I remember is being wheeled out of the pre-op area, next thing I know it's 2 hours later and I'm in the recovery area. The actual surgery was less than 30 minutes! The overnight stay was also great, nurses very capable, single room, everything clean. Meals were hospital grade, what can I say. All costs were covered by medicare and my secondary insurance. I cannot be more pleased that I went this route. I've learned from previous surgeries, get up and move about as soon as possible, I was walking the halls 4 hours after the surgery, and did so every couple of hours, all thru the night (can't sleep worth a crap in a hospital). Flew home 2 days later, not too painful. Now, 6 days later, very impressive black and blue area bigger than my open hand, but pain has been handled very well with just OTC drugs. See my endo doc this Friday for review. If I didn't mention it before, the Dr was Tobias Carling, website is adrenal dot com, he is only adrenal, but there are others there who specialize in other endo gland surgery.
I recently got a positive result from a 24hr catecholamine and total metanephrines test which is suspicious for pheo/para. My doctor had a CT scan of the adrenals ordered which came back clean, so now we has ordered a full body MIGB scan which is pending. I am at Northwestern Medicine, but am also reaching out to Mayo in case this becomes a very rare and difficult thing to treat. My main question at this time is about the catecholamine results. All three hormones came back elevated, but dopamine was truly off the charts whereas the other two were only slightly elevated. Has anyone else had this happen? Reading about it, it seems that predominantly-dopamine secreting tumors are more likely extra-adrenal, which mine is since the adrenal CT came back negative, and more likely to be malignant. I have only had pronounced symptoms of catecholamine excess for about one month (my docs are moving VERY fast for which I am very grateful), so I am hoping if it is malignant / more likely to become so, that we might be catching it early. The only other question I have is that if is not in my abdomen, and it is symptomatic, it seems from the literature that it is less likely in the head and neck region, so could it maybe be in my chest? Anyone have experience with that?
For background, here are my symptoms:
For a few years I have had tachycardia and chest pressure after really hard exercise, but didn't think a lot of it (until now). For the last month, I have had increasing number of episodic spells which include: tachycardia, blood pressure spikes, anxiety attacks, sweaty/clammy feet and hands, severe tingling and cold in hands and feet, dizziness upon standing, and constipation. One time last week I had twenty-five minutes straight of whole-body tremor. I have visited the ER twice and both times, all labs came back normal. Because my brother died of sudden death due to hypertrophic cardiomyopathy, they also checked out my heart extensively and said it is not damaged in the slightest; I have received echocardiograms every five years of my adult life and nothing has ever come back abnormal. I have been incredibly healthy, very active, and have never had hypertension or any other ongoing issue. The only other thing I have ever been tested for was enlarged lymph nodes in my neck; I had an MRI four years ago that came back negative and they suspected my lymph nodes were swollen because of COVID shots, which apparently happens in some people. They are still swollen all these years later but have not grown or changed at all.
megtrich, the symptoms you describe were similer for me, anxiety, sweaty in chest area, and several times of extreme tremors. In May my endo doc ordered an MRI of adrenal gland, which the radiologist read as normal, even though I had a 3 cm paraganglioma actually attached to my adrenal gland! Months later a larger area was scanned, and found it, they went back and looked at earlier MRI, it showed up there also, so don't be afraid to ask for other eyes to look at tests. My 24 hr urine test was way high in metanephrines, like 4 times the normal high limit. We are waiting on pathology results, but I was told that the paragangliomas usually are benign, so hopefully this is what will be your case. Keep us informed!
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I recently got a positive result from a 24hr catecholamine and total metanephrines test which is suspicious for pheo/para. My doctor had a CT scan of the adrenals ordered which came back clean, so now we has ordered a full body MIGB scan which is pending. I am at Northwestern Medicine, but am also reaching out to Mayo in case this becomes a very rare and difficult thing to treat. My main question at this time is about the catecholamine results. All three hormones came back elevated, but dopamine was truly off the charts whereas the other two were only slightly elevated. Has anyone else had this happen? Reading about it, it seems that predominantly-dopamine secreting tumors are more likely extra-adrenal, which mine is since the adrenal CT came back negative, and more likely to be malignant. I have only had pronounced symptoms of catecholamine excess for about one month (my docs are moving VERY fast for which I am very grateful), so I am hoping if it is malignant / more likely to become so, that we might be catching it early. The only other question I have is that if is not in my abdomen, and it is symptomatic, it seems from the literature that it is less likely in the head and neck region, so could it maybe be in my chest? Anyone have experience with that?
For background, here are my symptoms:
For a few years I have had tachycardia and chest pressure after really hard exercise, but didn't think a lot of it (until now). For the last month, I have had increasing number of episodic spells which include: tachycardia, blood pressure spikes, anxiety attacks, sweaty/clammy feet and hands, severe tingling and cold in hands and feet, dizziness upon standing, and constipation. One time last week I had twenty-five minutes straight of whole-body tremor. I have visited the ER twice and both times, all labs came back normal. Because my brother died of sudden death due to hypertrophic cardiomyopathy, they also checked out my heart extensively and said it is not damaged in the slightest; I have received echocardiograms every five years of my adult life and nothing has ever come back abnormal. I have been incredibly healthy, very active, and have never had hypertension or any other ongoing issue. The only other thing I have ever been tested for was enlarged lymph nodes in my neck; I had an MRI four years ago that came back negative and they suspected my lymph nodes were swollen because of COVID shots, which apparently happens in some people. They are still swollen all these years later but have not grown or changed at all.
I'm bringing in @vkoonz @larak @gsm13161 @coachv and others into this discussion to share their experiences with diagnosing a paraganglioma and testing with you.
@megtrich, you mentioned that your team is moving quickly. Do you have any update? Will you get a second opinion at Mayo Clinic? How are you doing?
Well, 6 days after having the paraganglioma removed, very happy! We traveled to Tampa on the 9th, and went to the hospital on the 10th, very early, 5:30 am. The facility is very well run, from front desk, check-in, the pre-op area, all the staff is capable, friendly, willing to answer any questions. The facility is only 3 years old, all equipment is top of the line. A CT scan is done to get a current pic of what is going on. My 10th surgery, I've always enjoyed the "happy juice" they give you to relax you, it's the old hippy in me. I don't know when they slipped me something, all I remember is being wheeled out of the pre-op area, next thing I know it's 2 hours later and I'm in the recovery area. The actual surgery was less than 30 minutes! The overnight stay was also great, nurses very capable, single room, everything clean. Meals were hospital grade, what can I say. All costs were covered by medicare and my secondary insurance. I cannot be more pleased that I went this route. I've learned from previous surgeries, get up and move about as soon as possible, I was walking the halls 4 hours after the surgery, and did so every couple of hours, all thru the night (can't sleep worth a crap in a hospital). Flew home 2 days later, not too painful. Now, 6 days later, very impressive black and blue area bigger than my open hand, but pain has been handled very well with just OTC drugs. See my endo doc this Friday for review. If I didn't mention it before, the Dr was Tobias Carling, website is adrenal dot com, he is only adrenal, but there are others there who specialize in other endo gland surgery.
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1 Reactionmegtrich, the symptoms you describe were similer for me, anxiety, sweaty in chest area, and several times of extreme tremors. In May my endo doc ordered an MRI of adrenal gland, which the radiologist read as normal, even though I had a 3 cm paraganglioma actually attached to my adrenal gland! Months later a larger area was scanned, and found it, they went back and looked at earlier MRI, it showed up there also, so don't be afraid to ask for other eyes to look at tests. My 24 hr urine test was way high in metanephrines, like 4 times the normal high limit. We are waiting on pathology results, but I was told that the paragangliomas usually are benign, so hopefully this is what will be your case. Keep us informed!
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