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Oh Me, Oh My


MeganMN

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Well, goodness.  Went to the Internal Med Doctor yesterday with a picture of my flushing episodes, my complaints of headaches, dizziness, and cognitive issues in light of drastically decreased tachycardia.  He is still convinced that a Carcinoid is in there somewhere.  Ordered about 15 blood tests (just got 17 vials drawn), an U/S of thyroid, MRI of liver/pancreas, and a consultation in Minneapolis with a NeuroEndocrine Tumor Specialist.  Eek.  Where is the Ativan?

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Megan, I know this is really hard right now, but it is good that you have a doctor who is willing to dig, & I actually do hope they find something that can be treated for you. 

If it is any comfort, I as a doctor would choose carcinoid above POTS-with-no-known-cause-or-treatment hands down. There are people living well for decades with carcinoid, & it tends to be very amenable to treatment even if it cannot be fully eradicated. 

I wish you the best of luck with your tests, & I hope you do have some ativan or similar on hand, there is no shame in it when going through this. 

B xxx

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Thank you @bombsh3ll . I felt super overwhelmed this week. We went from testing a couple of things over the course of a few weeks to ordering all these labs on Wednesday, three scans tomorrow, and an Oncologist on Monday. Thing suddenly became very real. I am amazed at how many people I have chatted with online that have Carcinoid and POTS.  Interesting connection. The body is fascinating.  thank you for the support! 

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Please do keep us updated! Carcinoid is one of the things I have not yet excluded so I am also very interested in the connection. I plan to keep searching until I have exhausted every possible known cause myself, but am prioritizing tests by availability, probability of being "it" and cost. I cannot get the 24 hour urine test as I would have to travel to London and stay in a hotel overnight, but I can get a Chromogranin A&B blood test close to home. 

I don't seem to have flushing episodes & don't have diarrhoea though.

Best of luck with your tests.

B xxx

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Dr called tonight and said they found something on my parathyroid and my parathyroid hormone was high.. Interesting. There is definitely some relief that they found something.....we go Monday to Abbott in Minneapolis to see the specialist...apparently the carcinomas tumors can secrete parathyroid hormone as well. 

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@MeganMN - I assume this is "good" news? A parathyroid tumor could very well cause a majority of your symptoms - hopefully surgery can be done??? I am keeping you in my prayers and join you in hoping for a quick fix!!!!!!! Be well!!!

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Feeling frustrated. Spent money we didn't have to put the kids in daycare, drove 3 hours one way to see what we thought was a specialist for neuroendocrine oncology. Drove around crazy Minneapolis. Got to appointment and met a really nice doctor who politely told us my symptoms most definitely are consistent with Serotonin release, possible endocrine syndrome, and said he cannot help and we need a NeuroEndocrinologist.  Nice....thanks for telling me what I already knew....did say if I get no concrete plans from Endo, he can trial the Octreotide.  Anyone know who to see in Minnesota for Endocrinology? 

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