Multiple abnormal hormone levels - Could it be autoimmune related?

Thanks, appreciate the response. If you do not mind, how much did it cost you to attend Mayo Clinic? Thing is I am 24 years old and my health insurance although PPO, is out of network at Mayo. The insurance carrier is known to be stingy with out of network providers, so I think it would basically be self-insured for me (unless I find employment opportunities at Mayo).

Hello @wdd18054

My carcinoids were found with an upper endoscopy (is that what you meant by an upper GI?). I have also had an EUS,endoscopic ultrasound, which can give a close-up of the pancreas as well as the upper digestive tract. In addition to the history of carcinoids, I have pancreatic cysts which are checked out periodically for growth and change. Have you had an upper endoscopy or an EUS?

In terms of lab work, annually I have a serotonin blood test which is always normal as well as a 24-urine test called a 5-HIAA, which has also been normal. There is also a blood test called chromogranin A (CgA), mine is always elevated, but this test can be elevated for other reasons (heart/kidney problems, etc.)

I look forward to hearing from you again. Solving medical mysteries is quite a challenge isn't it?

Teresa

Hello again @wdd1805

I'm wondering if you have had any problems with flushing, diarrhea (which are symptomatic of carcinoid syndrome)? How have your doctors approached hypoglycemic episodes? Any close up look at the pancreas, such as an EUS?

Teresa

I am supposed to have another upper endoscopy. Even though it takes only about 15 minutes I want to be out. i kept putting it off because it seems lie every time they check something they find something. just had one about a yr ago.

@wdd18054 Hi, friend. UUUHHHH..... Are you sure I did not write that? Anyway, All I have is a suggestion for you. Have your doctor contact Alnylam Pharmaceuticals and have them check your genetics, your RNA. Now, just a simple thought. It is quite possible, and some would say probable in any case, that in your body exist multiple autoimmune mutations of some autoimmune gene. Now, I cannot diagnose, as I am not a doctor, but in my case, it appears that my multiple mutations are of the hATTRwt type. There are a couple thousand varieties, I should think that Angela Dispenzieri and Martha Grogan at Mayo should also be able to help you.

Probably a Ga-68 PET/CT and if detected, a biopsy?

Hello @oregongirl

You don't mention the problem you are having that brings up the need for repeated upper endoscopies. I've had one nearly every year for several years and while they are not high on my "to-do list." I get through them OK. You mention that you "want to be out." Are you referring to anesthesia? Generally, this procedure always involves some anesthesia so you are not aware of what is going on.

I wish you well and I hope that you post again with any of your concerns.

Teresa

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.

Teresa I had problems swallowing. But I have been fine. One less appt. Between the oncologist, the Rheumatoloist, I should rent an apartment nearby

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.