Category Archives: CFS

To my first endocrinologist: Thank you for teaching me to do my homework.

When I came to you, it was after a lifetime of good health, during which the simple things that went wrong with me were easily diagnosed and treated by any medical school graduate. I wasn’t prepared for you. After a first examination, you told me I probably had Graves’ disease, which you did not bother explaining until I asked you to. You sent me for a nuclear medicine test that I later found out was unnecessary and may have harmed my eyes.

Worst of all, you over-prescribed me so much methimazole (a drug that inhibits the thyroid’s function) that I spent my first year as an interpreter in a complete state of zombiehood, minus the cravings for cerebellum. The dose that eventually got me back to healthy thyroid levels was one-twentieth of the amount you prescribed, and never subsequently altered.

During this frustrating and painful time, I found patient communities on the web — not just for support and commiseration, but also where experienced and knowledgeable patients were able to help me figure out exactly what was happening to me. I learned how to read my own labs, and why some of the numbers weren’t as useful as others. It was at this point I dropped you  and went in search of someone who wasn’t apathetic and incompetent.

So thank you for helping me learn how to find good information about medicine on the Internet, as well as connecting with other people in similar situations. Not only did I learn that yes, I can “fire” a bad doctor, but my mother learned from my experience and stood up to her own uncommunicative physician about a serious problem.

To my sports medicine doctor: Thank you for teaching me some qualities I won’t accept in a physician ever again.

When I came to you, for the first time in quite a while, it was perfectly understandable that you misdiagnosed me. I presented with nothing but joint stiffness so bad, I had to take time off work as I was unable to sign.

During my little sabbatical, I started to wonder whether the strange lacy red rash on my arms from a week ago or my subsequent bout of fever had anything to do with my joint problems. The first thing I did was type a few symptoms into the CDC’s search box, and the first result was human parvovirus. It matched exactly. I did a few more searches and all the information lined up.

When I brought this to you about a week later, that’s where you screwed up. You chuckled and said “You can find just about anything on the Internet.” You were supremely confident while you patronized me — even when I explained that my information came from the CDC. You couldn’t imagine a scenario where I had correctly diagnosed myself, which I guess was the reason why you protested testing my blood for antibodies. I’d already learned that many people develop those antibodies without getting sick, so it wasn’t a diagnostic test, but was still used to bolster evidence for the illness.

Thanks to that endo up there, I didn’t let it go. My information didn’t come from the website for “Billy Joe’s Bail Bonds and Medical Advice,” for the love of Mars. I felt (mostly) confident that my request was reasonable. And so you reluctantly agreed to do the test. And my, didn’t your tone change between that visit and the next one, when you informed me that I did in fact have the antibodies. The snotty condescension was gone now. I did appreciate that you apologized to me for the earlier brush-off. But boy, did I learn what kind of physician I needed: one who considered me a legitimate participant in my own healthcare, not an ignorant customer or a hypochondriac. One who didn’t feel the need to puff up like a pissed-off peacock when a patient brought her own information to bear. Oh, I’m sure you get a lot of crazy self-diagnoses. But by patronizing instead of listening, you wrote me off as a stereotype.

If the examination room is bigger on the inside, you have nothing to worry about.

To my third endocrinologist: Thank you for teaching me about physicians’ limits.

What happened? We started out so well. Despite learning through experience and numerous anecdotes about the odd behavior of people in your specialty, I was very happy with you…up to a point. Two points, really.

You were shocked — pleasingly to me — by how badly I’d been overmedicated, and started right away to correct that. You made it seem like you were on a mission to cure my thyroid. I also very much enjoyed how you always sat down with me and explained my lab results without patronizing me. I had learned a lot (for a layperson) about endocrinology by then, and you didn’t blow off my knowledge in our discussions. And I certainly did improve under your care.

Then I became euthyroid (neither hypo- nor hyper-). This should have improved my health greatly, but it didn’t. I still had fatigue, sometimes crushingly so. Our visits seemed increasingly pointless. You developed a motto: “Your thyroid is fine so you should be feeling fine.” It took me probably more time than it should have to realize that you weren’t saying “Let’s look into this some more”; you were saying “My part here is done and I can’t and/or don’t want to go any further than that.”

I realized this was a perfectly reasonable limit for a specialist, and since then every time I’ve seen one (and that ain’t a little), I’m prepared for the point where they really can’t help me anymore.

It was the second point that offended me. The last time I saw you, not only had I been confidently diagnosed with chronic fatigue syndrome (CFS) by a new — and current — GP, it had also begun to get worse. When I started seeing you, I worked in the same city, so appointments were a breeze. Then I took a job that was further away, but it was still doable to drive out to you. By my last visit, however, I had to drive an even greater distance, and then of course back again, which had become extremely difficult for me.

Then came the surprise. After that visit, I called for my test results, and was told no. I would have to schedule an office visit to get those numbers. I questioned the nurse receptionist: I had been diagnosed with an illness that made another office visit onerous and likely to cause  my symptoms to flare up. Could I not in this case simply get my results? No, I was told, the doctor wanted to sit down with me as usual to go over them. The receptionist tried to tell me that it was the rules, but I’d received test results over the phone plenty of times before, including being told that I had early-stage cancer. So that story became “it’s the doctor’s rules.” I asked if I could leave a message for you about this situation.

You never called me. And when I called back to find out what happened, all I got was the requirement to come in for an office visit. A visit I would have to pay for both physically and financially. My test results were being ransomed for those costs. I couldn’t believe that a doctor — they care for patients, right? — would not budge on this point, would not show the slightest bit of compassion for my situation. I didn’t believe I was asking for anything extraordinary at all. And in the end, instead of wasting energy being pissed off trying to negotiate this, I decided that your terms were unacceptable, not to mention greedy and unkind. And I was taught not only about physicians’ practical limitations, but also their moral ones. Never did get those test results, not even in the mail.

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Since all of this, I haven’t had any big problems with physicians. I can tell easily during the initial interview whether we’re going to work well together, and on my end I’ve also modified my own conversation patterns and expectations. When I look back at all these situations, I realize that a great deal of the problems rested on my not being an informed patient, not advocating for myself, and taking everything at face value. That would have helped greatly with that first endocrinologist; it definitely came in handy with the sports medicine guy.

So I am really and truly grateful that my negative experiences have produced positive results that will last me the rest of my life. And because I don’t want to leave on this note, I also want to thank the good doctors, the GPs and specialists who really want to help me, but usually can’t. My “CFS doc” has been amazing. I so appreciate the mutual respect of everyone who’s tried to get to the bottom of all my weirdo health stuff. In no way do I take this for granted — how could I, when I know full well what the alternatives are?