The genetic test came back OK, so to answer your question, no the genetic test didn't help other than make it less likely that my problem is genetically related. I am really not sure where to go from here.
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Funny you should post about genetics, my last appointment in Dec at Mayo was with the Genetics doctor, and I am waiting to get the results back, I am not sure if they will include what you mentioned but the panel he ordered is to cover almost 60 different endocrine related abnormalities.
Yes, I have had 3 different upper GI's, as well as a colonoscopy. They were all fine, other than the colonoscopy showed I had a longer than normal colon which caused the colon to have more twists and turns.
I have had several years ago the 5-HIAA, which did show some mild elevation but repeated tests came back normal. My chromogranin A was tested several years ago and it was normal as well.
I have had a 111IN-Octreotide in 2013, and in 2014 a F-18 FDG PET/CT of the chest. They showed a abnormality in the area of the tonsils and but felt this was nothing related or to be concerned about. Reports along with others also show a calcified area in my lung, but again the doctors felt there was nothing to worry about and it was not a problem.
The costs of the doctors visits were really no different that what I am being charged locally. However, there is really no way to say what the cost would be since there is so much variation on what each patient would need testing wise. I will say this the scheduling is wonderful, and I was able to accomplish more in a week at Mayo, it would have taken me MONTHS to have gotten it done locally and some of testing I would have had to went to Mayo as it is not available locally for me.
I few years back I did have trouble with flushing, but never problems with diarrhea. However I still have trouble with the rapid heart beat from time to time still. The Upper GI's have all been fine, I have had 3 over the last several years. I have not had a EUS's, but due to having gastric bypass it is not possible to do EUS the normal way, or at least that is my understanding.
Carcinoid has been one of the many things I have thought about. I have had a PET scan, and Octerotide scan. In addition I have had Upper GI, and colonoscopy which didn't so anything.
May I ask what tests you had done that was able to identify your Carcinoid?
I was followed by a endocrinologist in the pituitary area at Mayo in MN from 2012 till he retired in 2015 (after being at Mayo over 40 years) My experience working with him was wonderful. His approach was I am not sure what is going on with me, but we will keep track of your symptoms and test as needed, and this will show its self at some point.
However, when he retired my experience has been less than satisfactory from the pituitary area of the endocrinology department.
Even with that being said I would still encourage anyone who has not been there and feels they need to go, to please go because if you are to the point you feel you need to go to Mayo, it will probably be of some help.