In accounts of people who get their ulcerative colitis into remission, there is often a Perfect Doctor involved. A practitioner who, once found, guides the patient through diet and lifestyle changes on the road to recovery. In early 2015 I had not yet found my own Perfect Doctor, but my quest hadn’t ended.
There were a lot of possibilities, because Portland is a great medical town. We have a top-notch teaching hospital, a well-respected naturopathic college, and an abundance of medical options for patients to choose from, provided they have private health insurance. I did now, finally. I liked my gastroenterologist, Dr. L, but he was narrowly focused on conventional medicine. My sister’s naturopath, Dr. S, had been more holistic but had not known enough about my specific disease. So in the spring of 2015, I began working with a new naturopath, one who specialized in inflammatory bowel disease and other ailments of the gut.
Right off the bat, there were a lot of things I loved about Dr. W. He was well-versed on the Specific Carbohydrate Diet and knew a bit about macrobiotics. He was not totally scornful of conventional medicine the way many naturopaths are–he even said he sometimes prescribed Apriso, the mild med I was on. And in our first appointment, he listened with great sensitivity, offering sympathy when I once again broke down weeping as I described my history to him.
“I’m just so tired of being sick,” I said as I wept. I had said it before, and I would say it again. It always made me weepy to tell my story from the beginning.
Dr. W was surprised that the SCD hadn’t worked well for me. He questioned me at length on how exactly I had done it–had I included the probiotic yogurt? What foods had I allowed at first? Satisfied that I had followed the strict protocol, he frowned. “It does sound like you were doing it right. I’m surprised–it usually does work for ulcerative colitis.” When I described how macrobiotics, instead, had turned things around for me, he agreed that I should stay on a macrobiotic diet or something similar. And he also understood my desire to expand that diet carefully, starting with meat.
Like my sister’s naturopath, Dr. W was interested in the whole picture of my health. Not just my ulcerative colitis and digestion, but my whole body and being. Had I been under stress prior to onset? (Yes.) Had that stress eased? (Somewhat.) What other inflammatory conditions did I have? (Many.) When did they each begin? Had I always been underweight?
He was the first doctor to think at length on that last question. Dr. W was intrigued when I mentioned I had always had trouble keeping weight on. Perhaps that was related to my disease somehow, he said. Perhaps I had a hormonal imbalance.
I, too, was intrigued. It had never occurred to me to link my thinness to my disease. As a teen, I had wondered if something was wrong with me, but because I was active and athletic, I eventually shrugged it off. I must just have a high metabolism. But what if Dr. W was onto something? What if there had always been something off about my hormones? It would explain so much! My thinness, my autoimmune disease, maybe even my anxiety. Dr. W’s thinking added to my general positive impression of him.
In the short term, Dr. W prescribed adding coconut oil and fish oil to my diet. These were healthy oils that could support my weight-gain goal. The fish oil I could buy from him here, if I wanted, since he carried a brand he especially liked. He suggested we do a stool test for fecal calprotectin, an inflammatory marker, to see whether I was truly heading toward remission. And to get to the bottom of my disease, he wanted to run a series of hormone and food sensitivity tests. If my hormones were out of whack, then by treating them we might bring my whole body into a long-lost balance.
We scheduled me a fasting blood draw for a week later.
I picked up my stool test kit on the way out the door. At home, I dutifully followed the (gross) instructions and bundled the contents into the test kit. Then I noticed that the kit mentioned “requisition forms,” which I didn’t seem have. I was supposed to drive the sample to the lab myself, and I needed the forms in order to drop it off.
I emailed Dr. W’s office about the forms. Did you hand those off to me at my last appointment? I don’t think so, but sorry if I lost them.
The front desk staff was responsive and attentive, as they had been in my appointment. But to my increasing frustration, they could not seem to grasp what I needed. In three separate emails, they asked which test I was ordering. I reminded them. Several more times, they said they would send the forms “asap,” then hours passed and I had to remind them that they hadn’t yet sent anything.
At last, thirteen emails and two days later, they sent me the requisition forms. I was free to take the sample–which had been sitting in its box in my fridge–to the lab.
Everything else with Dr. W had felt so smooth and hopeful. I assumed the mixup was just a fluke.
I showed up to my blood draw appointment on time, hungry from skipping breakfast, and was ushered into a back room for Dr. W to draw my blood. After the needle was inserted into my vein, Dr. W bent to draw the blood out of my arm and into his tubes. Then he paused and sat back.
And here was where my problems with Dr. W and his office really began.
He had paused because, he explained, he had just realized he wasn’t sure which tests we were running. In our first appointment, he had named off the tests he wanted to do, but he now mentioned that he wasn’t sure which ones would be covered by Moda, my insurance company. My heart sank. I only wanted to do the covered ones, I said. I was unemployed, after all. Ron was working, but with the move and my illness we had been hemorrhaging money.
Dr. W nodded. At least a couple of the tests would very likely be covered. We could definitely do those. But he wasn’t sure about the others–the only way to know was to call Moda, and his office had a policy of not dealing directly with insurers.
The insurers just didn’t take naturopaths seriously, he lamented. Even insurers like Moda, which did cover his office, did not work well with him because he was a naturopath. It would thus be my task to call Moda and ask which specific tests would be covered.
That was fine, I said. Half my brain was focused on trying not to think about the needle, which was still sticking into the vein in my inner elbow. Best not to look at it. I kept my eyes fixed firmly on Dr. W as we had this conversation. By now he had gone to the front desk and retrieved a form that described one of the tests. He was standing in front of me, shuffling papers.
I could call Moda, I said. But after we drew the blood, of course? Not right now? How about if we just drew all the blood we would potentially need to run all the tests, then I could call Moda right after the blood draw?
That could work, he said, thinking from his stance in the middle of the little room. He seemed totally oblivious to the needle in my arm. He did really hope that we could do all the hormone tests, he mused. It seemed really important to understand what was causing my inflammatory conditions, my failure to gain weight.
By now our conversation had lasted ten minutes. I was having trouble keeping my eyes away from the needle.
“Can we talk about this after the needle’s out of my arm?” I finally blurted.
“Oh, sure. Of course.” He drew my blood into several plastic tubes, each tube filling with the thick, deep red fluid. It was a lot of blood. He took the needle out of my arm at last and wrapped me with a bandage. I breathed a sigh of relief and felt my whole body relax.
“I do highly recommend the hormone tests, even if you have to pay out of pocket.” He gave me a serious look. “It’s a thousand dollars for the test bundle that I most recommend. I know that might sound steep, but as far as tests go, that is a pretty standard fee.”
I nodded absently, but Ron and I were not about to spend a casual thousand dollars on a test. I rubbed the bandage on my elbow, still awash in relief to be free of the needle.
“If it were me,” Dr. W said, “if things ever got to the point where I needed to spend a thousand dollars on testing, it would be worth it because it would go toward good health.”
At this statement I finally came out of my relieved reverie. A bubble of agitation was expanding in my chest. First of all, there was the subjectivity in his statement that I “needed” to spend this thousand dollars. I mean, I liked Dr. W, but we had just started working together. No previous doctor or naturopath had recommended this test. “Needed” wasn’t the right word. And also, I generally dislike the term “worth it.” Again, it’s subjective, totally dependent on your situation–how much money you have to throw around, what you’re sacrificing to do so. How can any one person ever tell another person which price or fee will be “worth it”?
“For me, that point has come and gone,” I said brusquely, cutting off Dr. W’s urgings. “I’ve been unemployed for eight months already, largely because of my illness. So I’ve already lost many thousands of dollars to it. And I’ve already spent a lot of money out of pocket on it, on top of that. At this point, I don’t have more thousands of dollars to throw around.”
Dr. W nodded, picking up on my tone. He humbly said he understood.
On the way out of his office, I stopped by the front desk and wrote down the official medical codes for each of the several tests he recommended. We agreed that he would keep my blood in the various tubes until I called to relay which tests to request from the lab. Back in my car, I called Moda from the parking lot while eating almond butter and an avocado. The folks at Moda seemed surprised by my question, which normally came directly from doctors’ and naturopaths’ offices, not from patients. But after some transfers and holds, I gave someone the test codes and learned which tests were covered and which weren’t. Some of the tests first required authorization–Dr. W needed to download an authorization form off Moda’s website and submit chart notes about why those tests were justified. I got directions for the authorization form’s online location and noted which tests needed it. Then I called Dr. W’s office back with all the information.
My follow-up with Dr. W was ten days later. By then, presumably the results should have come in. I arrived in his office excited to learn about my hormones, and expecting Dr. W to have followed my instructions or at least called me if the results weren’t in yet. But as we sat down, he mentioned that he had some bad news: most of my blood had been thrown out.
“We weren’t sure which tests we were supposed to run, because we didn’t know which ones were covered by your insurer,” he explained.
My jaw dropped. “I called the front desk an hour after I left. I told them which tests were covered… You were supposed to submit authorization forms for some of them. Did you not get the message?”
There had been some kind of miscommunication. Somehow, my message hadn’t been clear enough.
Dr. W was very apologetic. But if I wanted those tests run, we would have to schedule another blood draw. I wouldn’t be charged anything extra, he assured me, knowing I was concerned about costs. The only charge would be for the tests.
I am a pretty patient person. A patient patient. While I was annoyed with the apparent flakiness of his office, I swallowed my ire. He was still my best bet for a Perfect Doctor. Crossing my fingers that all of this was abnormal for him, I scheduled a second blood draw, for which I would again have to fast.
No longer trusting Dr. W and his staff to get authorization for the various tests, I made many phone calls before my next blood draw. I called Moda to double-check which tests needed authorization. I called Dr. W’s staff to remind them to download the forms, and explain where to find them. (Why didn’t they already know?) I called again to remind them to submit the forms, then called Moda to double-check that they had been received, then called Moda later to find out whether the tests had yet been approved. Many of the calls involved long wait times, especially with Moda. In the month of March, I spent around thirty to forty hours emailing and calling back and forth between Dr. W and Moda about test approval.
Thirty to forty hours.
In the process, it became obvious that most of Dr. W’s patients didn’t do all this. His staff wasn’t accustomed to submitting test authorizations to insurers. Why? The only reason I could think of was that his other patients did not care whether their tests were covered. They were prepared to pay out of pocket.
In other words, Dr. W was only used to working with patients who could afford to pay for all the tests themselves.
My second blood draw with Dr. W went smoothly. No needle sticking in my arm for ten minutes, no mixups about which tests should be ordered.
The tests were mainly run through Boston Heart Diagnostics. They included diabetes, liver, kidney, thyroid, fatty-acid balance, and hormone tests. Looking at the shiny booklet full of dozens of numbers, the only flagged results were for fatty-acid balance–my monounsaturated and omega-3 fatty acid indices were low, so I was advised to eat more almonds, avocados, flax and chia seeds, and other foods containing those kinds of fats. Nothing seemed amiss in my hormones, although we hadn’t been able to run a more extensive hormone test because it wasn’t covered.
While I wasn’t blown away by any of the blood test results, I was downright ecstatic to learn my fecal calprotectin level, the result from the stool test. Fecal calprotectin is an inflammatory marker, and a reliable way to measure inflammation in the GI tract. The “reference range” of this test is less than 50 μg/g–a healthy person with no intestinal inflammation will have less than 50 micrograms of fecal calprotectin per gram of sample. Any result over 120.1 μg/g is considered abnormal, or inflamed. In November, when Dr. L had ordered this test for me, my result had been 466 μg/g. Very inflamed. That concentration is fairly typical for someone in an ulcerative colitis flare-up, but at the time it had nevertheless seemed alarming.
Today, just a couple months later, Dr. W told me that my new result was 24 μg/g. I was completely within the normal range!!! No wonder I was feeling better.
Despite my happiness about the fecal calprotectin, though, by the time we met I had mentally moved on from Dr. W. All the phone calls back and forth with his office and Moda had been too exhausting. My health was improving without much assistance from him, it didn’t look like much was amiss in terms of my bloodwork or hormones, and his flakiness had eroded my trust in his judgment. Whatever we might learn by probing further, it just wasn’t worth the trouble to work with him. Maybe I could contact him again in the future, but for now I would slip away quietly. That was what I had done with the other naturopath.
I didn’t want to hurt his feelings.
In late April, I received an unexpected bill: $240.12 for my fecal calprotectin test. The lab where I had dropped off my sample was billing me for the test. They had first billed Moda, but the claim had been denied.
I called Moda and learned that the test was considered “investigational” and thus required prior authorization. We hadn’t checked on this when we ordered it. I had assumed it would be covered, because Dr. L had ordered it just months before and it had been covered then.
But Moda explained that naturopaths were required to submit more paperwork than gastroenterologists. Dr. W had been right about this: Moda trusted GI doctors’ judgment more. Naturopaths required prior authorization to run some of the same tests.
Annoyed once again–now with both Moda and Dr. W–I emailed Dr. W’s office and told them I did not want to pay this bill. I had assumed that all tests ordered through your office would be covered, or that I’d be asked in advance if I might be charged for them.
His office agreed to submit the claim to Moda themselves for the test. That would drop the fee to $65. I threw up my hands, agreed to pay, and privately decided never to work with Dr. W again. This bill was the last straw.
In May, his office left me a voice mail. It had been months since I’d seen him, so they were calling to check in. Did I want another follow-up appointment?
I sent them an email in response, explaining that I would be refraining from follow-ups. I have found Dr. W to be a good medical expert and good listener, but I’ve been put off by a few things. The main one is your office’s refusal to deal directly with insurance companies, which has placed an overwhelming burden on me. Between being sick and trying to catch up on my life and rebuild my life after a long bout with illness, I just don’t have the time and energy and patience required to be my own health care administrator. I’ve decided to go a different route with my medical care, taking a step back from naturopaths for now.
Strike two for naturopaths.