Pheochromocytoma Support Group
A pheochromocytoma is a tumor of the medulla of the adrenal glands originating in the chromaffin cells, which secretes excessive amounts of catecholamines, usually epinephrine and norepinephrine. Extra-adrenal paragangliomas are closely related, though less common, tumors that originate in the ganglia of the sympathetic nervous system and are named based upon the primary...
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I am wondering if anyone at all is going through anything similar what I am. I first went to see an endocrinologist because I thought I was hyperthyroid- my symptoms for about 6 years have been insomnia, heart palpitations, hot flashes but ice cold hands and feet, stomach aches, constipation, anxiety attacks- some that last for days. Latley Ive also been getting headaches and vomiting. The first appointment I had she said she thought it was Pheo- bloodwork and 24 urine show my catecholomines to be 7 times the normal amount (very high norephinepherine) - I had an abdominal and brain MRI, as well as an MIGB scan. The MIGB did not find a Pheo but the scan showed that my adrenal glands were up taking more of the dye than my liver and that my adrenals are more active than my liver (which they shouldn't be) I also have high levels of prolactin but I am not / never have been pregnant. Since they can't find a Pheo or a tumor on my pituitary they are diagnosing it as "general anxiety and depression" ... I just know something is causing these symptoms and levels to be so high and it's not 'anxiety and depression disorders' --- does anyone have any thoughts or suggestions to something they might be missing? I will try anything. I am feeling so desperate for some answers and for some hope.
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You can find help here.
https://www.facebook.com/groups/pheoparasupportgroup/
I am going through the same thing.. elevated labs, sick from the symptoms, yet nothing revealed on the scan.