Hi, this is my first post! I have had symptoms since January, gone to multiple specialist and still no diagnosis. It is so frustrating! A little background first. About a year ago I had my thyroid removed due to questionable cells and difficulty swallowing. I had been on synthroid for 8 years. Four months ago, I had 2 syncopal episodes, and started having dizziness, HA, crazy flushing constantly, heart palpatations with minimal exertion, shortness of breath, weakness, shaky, slight chest pain on occasion, mind foggy & changes in bowel habits, After several doctors and test and no diagnosis I started researching and it sounded like I may have had vegus nerve damage from thyroid surgery. I got a referral to Vanderbuilt Neurology because they have an autonomic center. Yesterday I had a second tilt table (a cardiologist did the first one in Jan. - Normal) and the second one was normal, as well as the valsalva and deep breathing test. So I guess my question is can someone have vegus nerve damage without it affecting the barocepters causing spikes and drops in blood pressure. Or could it be that the testing was unable to replicate my symptoms. After follow up with my neurologist, he suggested no answers, prescribed propranolol to regulate my heart rate and recommended we repeat the testing again in 6 mos. Maybe this is related to my thyroid medication, I just don't know ( the endocrinologist at Vandy said everything looked good) or maybe it's a case of Menoause from hell ( my period stopped in Oct.)! I am at my wits end, I have had to quit working & I can't even pick up my 18 month old grandson for near syncopal episodes. Any insight would be greatly appreciated.
So, did the endocrinologist check with a plasma free metanephrines test (fasting blood test) for pheochromocytoma, to try to rule that out? That rare catecholamine emitting tumor can be associated with blood pressure spikes, headache, palpitations, etc. and there can be quiet periods.
Were they thorough with cortisol testing?
Did they look at your renin and aldosterone?
Did a doctor do not only a CBC but an iron panel on you? Iron deficiency can lead to headaches, palpitations, dizziness, etc..
Did any doctor do an MRI, with and without contrast of your brain? Did they do an MRI to look at your cervical spine?
My son has POTS and MCAS. The symptoms overlap quite a bit. Have you looked into MCAS? Here is a link to the symptoms of MCAS. MCAS is mast cell activation syndrome, the mast cells in the body behave badly causing the symptoms. The first line of treatment is double doses of anti histamines, H1 and H2 types(ie. Zyrtec and Zantac).
I saw an endocrinologist first, labs were done to check my cortisol levels and they were in normal range, so it appears I would not have pheochromocytoma. As far as mastocytosis, I have not had any specific testing that I know of, but I understand it causes skin leisons, and those I don't have. With all the different testing I have had, I would think that something would be off, which would cause reason for concern in one area or another, but that just has not happened. I now have limitations to my previously active lifestyle and it's been hard to adjust to. I hope to find answers some day! Christy, I hope the best for your son and for you as his caregiver. I'll be praying for you both! Thanks everyone for the advise. It means so much to find support!
Cortisol is not what they would look at for pheochromocytoma though. Did they run a plasma free metanephrines (fasting blood) test or check the metanephrines in a 24 hour urine tests? These are the kinds of tests they do to try to rule out pheochromocytoma.
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