Hey everyone! just wanted to post an update. I did finally end up going to the Mayo clinic in Rochester after finally finding a doctor who would refer me so that my insurance would cover the visit. Unfortunately they were unable to be as extensive as they would have liked thanks to my insurance not wanting to work with them in a timely manner and me not being able to cover the costs myself. They were very nice there though! Did more testing in the two weeks I was there than most of my doctors have in two years and they even waived the fee on my last appointment to help me handle the cost!
I had a few labs come back abnormal for once which is probably a weird thing to be excited about but after years of doctors knowing I am sick (several times with physical symptoms they were actually able to see for themselves) but normal lab results so they couldn't figure it out, having abnormal lab results has me feeling hopeful for answers!
My vitamin D levels are low. They were an 8 when they tested, with an optimal range being between 20 and 50. They now have me taking 5000 ui of vitamin D for three months and at the end of that three months (which will be the end of this month!) I have to go in to my regular doctor to get those levels retested. If they come back abnormal again then I am supposed to get tested for Celiac disease. They already did the blood test for Celiac disease at mayo but that came back normal. The doctors at mayo told me about 10% of people with Celiac disease have a normal blood test and with all my symptoms, they weren't ready to rule it out until they see how my body absorbs these vitamin D supplements.
My cortisol levels also came back low. A 5 with a reference range of 7-25. I was told I should have been on the higher end of that reference range though because they ran the cortisol test first thing in the morning when my cortisol should have been at its highest. I am also getting my cortisol levels rechecked at the three month mark (the end of this month.) and if it comes back weird again, they will dig further into that.
They also tested my thyroid levels with a TSH test that came back high (4.6 with a ref range of 0.3 – 4.2) indicating I may have some kind of thyroid condition that they caught early. I was told they don't do any treatment however unless those levels come back at at least a 10 because otherwise the medication could hurt more than it would help. I am supposed to go get my thyroid levels retested at the 6 month mark (about 4 months from now) and again at the 12 month mark just to make sure my thyroid levels don't get worse.
A few other results came back a little off but the doctors didn't feel those results held any significance so I won't mention them here.
Additionally, my primary care doctor wanted me to get the sores in my mouth tested for herpes the next time I had an outbreak of 4 or more sores. Due to the circumstances in my life at the time I wasn't able to get that done for the first few outbreaks but I finally got it done. The test results were negative, so not herpes. If I do end up having Celiac Disease then I have been told it could be a symptom of it.
Unfortunately my regular doctor just retired so while dealing with all of this I also have to find a new doctor who will believe me, be helpful, and take my insurance. I have an appointment with what will hopefully be my new primary care doctor in a few days to establish care and get my levels retested.