Read my recent articles:
Healthy but hurting: Medicating fibromyalgia

Healthy but hurting: How I got my fibromyalgia diagnosis—doctors, tests and more doctors

Healthy but hurting: My life with fibromyalgia

In week two of my column, I discussed the endless list of doctors I have been to in the last two years. One of those doctors is an oncologist, commonly known as a doctor who treats cancer.

To preface, I would like to say that I do not have cancer, but there was a period of time where I worried I did.

It started with my dermatologist. ​​I had been experiencing some unexplained flushing on my chest and face for some time. The “rash” was red and splotchy, but didn’t itch or burn. In fact, most of the time I didn’t even know it was happening unless I happened to look in the mirror. The dermatologist didn’t have a good explanation for the flushing, so he gave me a couple of creams to try and an order for lab work, but he didn’t tell me what it was for.

Being the control-freak I am, I checked MyChart a few days later and found out it was a 5-HIAA urine lab. This meant nothing to me, but after some Googling, I found out that it measured the amount of serotonin in the body. Seems fine, right? Wrong. The 5-HIAA lab is used to help diagnose and monitor carcinoid tumors. Queue the freakout.

My lab work eventually came back and my 5-HIAA level was 44.4 mg/g when the standard range was 0-6.9 mg/g. Now I was really freaking out.

It was now beyond my dermatologist’s expertise, so he referred me to an oncologist. One of the main things my oncologist had me do was an extended version of the 5-HIAA lab. Instead of having to give a random sample, I now had to collect my urine for 24 hours. Furthermore, I had to stop taking two of my prescription medications for two weeks in order to get accurate results, since those medications could affect my serotonin levels.

When my lab work came back, it was within the normal range, but the tests didn’t stop there. The next step my oncologist had me take was getting a CT scan of my entire body. We were looking for a small tumor known as a carcinoid tumor.
My CT results came back and it wasn’t necessarily good news. The scans showed a mass near my uterus, so my oncologist referred me to a gynecologist to further look into it.

Here’s where it gets weird. My doctor had me get a pelvic ultrasound, and much to my surprise, there was nothing there. The ultrasound and CT scan conflicted, so I got another ultrasound, which once again showed nothing.

At this point, my oncologist had exhausted his options, but we were still worried that I could have this small, rare tumor because of the CT scan results and my unexplained symptoms.

This is when I was referred to Mayo Clinic. It took a couple of months to be able to get a starting appointment, but in April 2021, we drove to Rochester, Minnesota to seek further help.

Mayo Clinic works differently than the average medical center since people travel from all over the country, and even the world, to visit.

My mom and I had blocked off a week to be at Mayo Clinic. At our initial appointment with a gastroenterologist, I was asked a lot of questions about my symptoms, and from there we made a plan of action for what lab work and tests to get done.

It was a crazy week. In the time I wasn’t seeing doctors, I was attending classes via Zoom and doing homework or sitting in waiting rooms hoping that someone wouldn’t show up for their appointment so that I could see the doctor before I left.

While I was there I had lab work to test for different things such as celiac disease, an autonomic reflex screen, a PET CT scan, an upper GI endoscopy, an EGD, a flexible sigmoidoscopy, a sweat test and more.

The week came to a close and I was lucky enough to see all of the doctors I needed to before I left. I had a final appointment where we reviewed all of my test results, and it was determined that I certainly did not have a tumor of any kind.

My doctor at Mayo Clinic attributed the unexplained symptoms I had been experiencing to fibromyalgia. The only other diagnosis I left with was irritable bowel syndrome.

Looking back on the experience, I could view it as a waste of time and money, but I think that if I had not made the trip to Mayo Clinic, I would still be worrying that I had a tumor somewhere inside me.

The repercussions of the trip were not small. As insurance started processing claims, I racked up about $4,500 in medical bills, and that was with good insurance. The real hit came when months later I received a bill for the amount of $8,739.63. Insurance had denied the claim for the PET CT scan. In their opinion, it was an experimental procedure, so therefore they wouldn’t cover it.

Keep in mind I had already paid $4,500, and now I was receiving another bill for almost double that. BlueCross BlueShield, the company I have insurance through, gave me the option to dispute the denial, so I did just that. I requested all of my medical records from Mayo Clinic and mailed them off, hoping they would see that the scan was necessary to rule out the carcinoid tumor.

I waited a month for the company to make their decision about the claim. They denied my appeal and I still owed $8,739.63.

After talking to Mayo Clinic about what options I had, I was told to apply for charity money to help pay for my bill. Just this week, I sent off the paperwork for the application. The stack of papers was so thick that they actually had to send it in a box instead of an envelope.

Documents they required for the application included my tax records for the last two years, my parents tax records for the last two years (since they claim me as a dependent), pay stubs for the last three months, bank account records for the last three months, student verification status, a letter as to why I was applying and more.

I am now waiting to hear back if I will receive money to help pay for my bill. If I am once again denied, I am not sure what I will do.

I don’t want anyone to feel sorry for me. I am very fortunate to live the life I live and to even have the opportunity and means to go to Mayo Clinic.

The point I would like to make is how obscene the healthcare and insurance industry is. It is scary how in the matter of a week, you can rack up over $10,000 in medical bills, even if you have insurance.

I will dive further into this topic next week, so I hope you enjoyed reading about my experience at Mayo Clinic and I encourage you to follow my column by subscribing to Washburn Review’s email newsletter.

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Edited by Ellie Walker