Medical crises, mental illness, and patients’ rights

I’ve been pretty quiet for the last two weeks, mostly due to some serious medical drama – side effects of the lithium I was taking for bipolar disorder. It’s mostly resolved now, but I want to explain what happened, why I fired my psychiatrist, and how I’m approaching finding a better doctor. (Bonus: You get my personal “Bill of Rights” as a patient, particularly one with mental illness, who needs medical treatment.)

What happened to me

I wrote my previous blog post on the 29th, and went to bed feeling fine. In the middle of the night, I woke up feeling somewhat thirsty, so I drank a glass of water and went back to bed. This isn’t a huge thing; it happens to me fairly frequently.

But this time was different, because the thirst didn’t go away. In fact, I spent much of the rest of the night feeling horribly thirsty – I drank over half a gallon of water in four hours, and was still awake, tormented by thirst, the following morning.

I wasn’t sure if I had simply gotten dehydrated the night before, so I drank a bunch more water and went to the gym to work out. During a half-hour cardio workout, I drank half a gallon of water (with electrolytes) and still ran out of water before the end. And finished the workout feeling thirsty.

I still wasn’t sure what was going on, so I spent another day drinking water. Daytime wasn’t too bad, but night was excruciating. To make sure I didn’t get dehydrated, I drank 24 ounces of water before going to bed. I slept well for an hour, then woke up feeling thirsty. I drank another 24 ounces of water, and got back in bed. This time I couldn’t even get back to sleep, because my mouth was dry and my tongue felt like a stone in my mouth. I lay in bed for an hour waiting for all the water to rehydrate me, but it didn’t. Finally I got up, drank some more water, worked on the computer for an hour (still feeling thirsty), then abandoned all subtlety, guzzled down a quart of water, and got back into bed. And finally got to sleep, for about four hours. And woke up with a dry mouth, gritty eyes, and a burning thirst that would not go away.

After staggering out of bed and drinking another quart of water (no effect), I started Googling “extreme thirst”. I discovered that extreme thirst generally has two causes: diabetes mellitus and diabetes insipidus.

Diabetes mellitus (what most people mean when they say “diabetes”) causes thirst because your cells stop taking in insulin, your body can’t regulate blood glucose levels appropriately. This typically results in in overly high blood glucose levels. The kidneys then try to protect the body by excreting the excess glucose in urine. This requires a lot of water. So you have to drink like crazy to stay hydrated, because your kidneys are pouring the water out of your body as fast as you can pour it in.

Some more research suggested that this problem doesn’t happen until your blood glucose rises above 200 mg/dl. I had had my blood glucose levels tested six weeks earlier. (Because some of my bipolar medications impact various vital organs, I have a complete blood panel worked up every six months.) Anyway, my blood glucose had soared from prediabetic to diabetic since the previous month – but at the very low end of the diabetic range. Nowhere near 200 mg/dL. If it had soared up further, I was in serious trouble, both because of the immediate problem and because of the implications of swiftly rising glucose levels.

I went on reading.

Diabetes insipidus, the other culprit, is a condition where your kidneys can’t concentrate urine. They stop reabsorbing water as they filter out toxins. So – as in diabetes mellitus, but for different reasons – you generate urine at a frightening rate, and you have to guzzle water almost constantly to stay hydrated. The difference is that in diabetes mellitus, your urine contains lots of glucose, so it tastes sweet, and in diabetes insipidus, it doesn’t – in fact, it has no flavor whatsoever because it’s basically just water. And that’s how these two disorders got their names. “Diabetes mellitus” literally means “sweet urine,” and “diabetes insipidus” means “tasteless urine”. (Let’s skip thinking about how they diagnosed/distinguished these two disorders before modern medicine, OK?)

And what causes diabetes insipidus? Well, for people who are not pregnant, have not had head trauma, brain surgery, or pituitary cancer…the #1 cause is taking lithium carbonate. Which is generally prescribed to treat…surprise! Bipolar disorder.

Guess what medication I had switched to last year?

I kept reading.

It turns out that not only is lithium the most common cause of diabetes insipidus, but diabetes insipidus is one of the most common side effects of lithium. In fact, half of people who take lithium will eventually develop diabetes insipidus.

Further reading didn’t turn up anything new. So I texted my psychiatrist to let him know about my symptoms, asking if it could be lithium-induced diabetes insipidus. A few minutes later (on a Saturday morning!), he called me to say that he was concerned that my blood glucose levels had soared dangerously high, and to get to urgent care as soon as I could.

I asked if it might be lithium-induced diabetes insipidus, and he said it probably wasn’t. He explained that normally diabetes inspidus comes on gradually, and since I hadn’t noticed symptoms earlier, and I was on a very low dose of lithium, it was much more likely to be diabetes mellitus. He suggested getting my blood sugar and kidney function tested, but urged me to go as quickly as possible because high blood sugar can be extremely dangerous.

So I headed straight to urgent care. They whisked me in, ran some tests, and determined that my blood sugar had actually dropped four points since the last time and was now only nine points into the diabetic zone – i.e. nowhere near the level needed for diabetes mellitus to be causing the problem. The labs also showed that my kidney and thyroid function were normal, and that my liver enzymes were unchanged.

I tried to schedule an appointment with my primary care doc, but the front desk wasn’t able to schedule me, and they didn’t know why.

So I texted my psychiatrist to tell him the test results, and that I couldn’t get an appointment with my primary care doc, and asked what to do next. He said, “I’m pretty sure it’s not lithium induced. I don’t know what it is. I think your primary care doc is on vacation, but someone should be covering for her, so call their front desk for an urgent appointment with whoever is covering for her.”

Ill spare you the details of the medical runaround that followed. But when I finally saw the endocrinologist, she snorted and explained that my psychiatrist was wrong. “Exposure to lithium is the driving factor, not the dosage, and since patients taking lithium tend to drink more anyway, it’s easy for it to sneak up on you. Why would you go looking for things like pituitary tumors when the #1 cause of the disorder is a medication you’re taking?”

I finally told my psychiatrist, “I don’t care whether you think the lithium is causing it. I think it’s causing it, and I want off.”

So we agreed to stop the lithium. That night, I was much less thirsty, and the following day the problem had mostly disappeared. Yay!

Which left me with a new problem. I had been taking the lithium to stave off the bipolar disorder. So in another day or two, when the lithium cleared out of my system, the bipolar disorder might start coming back. And some medications, including lithium, have a “rebound effect” – if you stop taking it abruptly, the mental illness comes back worse than when you started taking the medication. Given that my bipolar disorder manifests itself more or less continuously if I’m not taking medication, there was a pretty good chance that serious bipolar depression was barreling down on me and would arrive shortly. I had maybe 3-10 days to find another medication that worked.

I told my psychiatrist that I wanted to try a new med because I was worried about lithium’s rebound effect. He said, “Don’t worry – it doesn’t have a rebound effect. I don’t know why people say that, because it tapers naturally out of the body over about five days. How about we just discontinue the lithium, stay on the lamotrigine, and try something new if the symptoms start coming back?”

I said, “But we experimented last year and found out that the lamotrigine isn’t enough on its own. And I’ve read five research papers on the NIH website [the National Institute of Health funds a lot of U.S. medical research] – and they all say lithium has a rebound effect. So I’d like to go back onto the Abilify, for now.”

So that’s what we did. And, of course, I immediately started looking for a new psychiatrist.

Why mental illness can make it hard for patients to find and address a doctor’s errors

The moral of this story should be pretty clear. Doctors are medical professionals, and in general, they probably know more than you do, but don’t assume they’re right. Especially if you have a life-threatening medical condition. Because in every profession there are some who don’t communicate well, some incompetents, and some who are generally great doctors but just happen to be wrong in your particular case. Even good doctors can be wrong. If your condition is serious enough, their errors can have awful consequences.

This is particularly true for mental illness. Doctors can be arrogant and/or make mistakes in other fields, but for patients with mental illness, these mistakes can be much harder for patients to identify and correct. Because people with mental illness are typically considered to be intrinsically irrational – by their doctors, their family and friends, and themselves. It’s not totally without reason: Mental illness literally means there’s something wrong in your mind, and mental illnesses are notorious for distorting people’s thinking. As a result, if you have a mental illness, both you and the people around you are apt to think that your doctor knows better than you.

It’s also easy to become intimidated by your mental health professionals because, unlike other doctors, your psychiatrist and therapist have the legal power to lock you up against your will, if they feel you’re being both irrational and dangerous. (The legal standard is “if you are a danger to yourself and others”.)

This undermining of your confidence and intimidation by your doctor’s powers can be dangerous. I gained forty pounds over ten years because – despite bugging me for a decade about the need to lose weight – my psychiatrist didn’t tell me that one of my medications had a weight gain side effect. 40 pounds of additional fat on a 140-pound woman is a LOT of fat. That 40 pounds of fat is almost certainly why I now have Type II diabetes and the beginnings of fatty liver disease. And yes, I probably should have investigated earlier, but I trusted my doctor to recognize and inform me if my medications were causing health problems, and he didn’t. I spent over a week suffering from tormenting thirst because he didn’t think it could be caused by lithium, and narrowly sidestepped a rebound effect he didn’t think existed. His errors could have killed me – especially if my mental illness weren’t well-controlled enough for me to be confident of my perceptions and choices.

So if you have a mental illness, please make certain you have the information you need,and don’t trust your doctor unconditionally. Ask your friends or family to support you. If you have a friend or family member who is willing to help, ask them to help research anything you aren’t comfortable with. If you aren’t confident of your own mental judgment and perceptions, ask them for their opinions and observations about your mood. While you should be able to trust your doctor, that trust should not be unconditional – get input and information from others if you can, so you can make an informed decision.

(When I am having mood issues, the first thing I do is tell all my friends, especially the ones who see me regularly, and ask them to look for any mood or behavioral changes. It’s not just a safety net; it’s an opportunity to cross-check my own perceptions and what my doctor is telling me.)

Finding a new doctor

As a result of all the medical drama, I’ve fired the psychiatrist I was seeing, and have signed up with a new one. This psychiatrist is an expert on bipolar disorder. At least, he’d better be, because he heads up the Bipolar Clinic at Stanford, has published 62 peer-reviewed papers about bipolar disorder, and wrote several chapters of the American Psychiatric Association’s Handbook of Diagnosis and Treatment of Bipolar Disorders, which is their manual for doctors.

I trust his expertise. But before starting with him, I’m writing up three documents. The first is a patient history that includes not just medications and bipolar disorder flare-ups, but also my experience with various treatments/doctors, and the overall impact that bipolar disorder has had on my life. I want him to have the most complete information possible before making a diagnosis,and that’s more than symptoms and medications.

The second document explains my goals. There’s the obvious one, getting treatment for my bipolar disorder. But I also want to educate myself about bipolar disorder, at least as it relates to my case and treatment. I could probably see a psychiatrist with far less impressive credentials and find a medication combo that works. But I want someone who knows what’s going on in the research world, and can not only explain things to me at a higher level, but who can point me at research papers that might be useful to me as I educate myself as a patient.

My expectations from a doctor

The third document is a set of working agreements. He gave me a list of his expectations from a patient, which is great. I’m going to give him a list of my expectations of a doctor, and I intend to start our intake appointment next week by discussing those expectations. They’re pretty straightforward.

1. Explain things to me logically and provide references/other information sources if I ask for them. Don’t talk down to me, and don’t get offended if I sometimes question what you tell me, based on reputable sources from my own research. I don’t think I’m a doctor, but even experts can be ignorant in one particular area, and this is my health and my life we’re talking about. I’d be irresponsible if I didn’t cross-check.
2. If you aren’t sure about something, tell me you’re not sure. I don’t expect you to be an expert in everything, but I need to know where I can have full confidence and where I might want to verify with other resources. 
3. Respect my agency in making decisions. Give me your analysis of the situation and let me decide what to do. Don’t withhold information, intentionally or otherwise, because your job is to provide me with the information I need to choose the right course of treatment. I value your opinion, but the choice is mine, not yours, and I need full information to make that informed choice.
4. Work and communicate proactively with the rest of my care team.
5. Don’t drop me just because you think I’m going to kill myself.

I consider this a basic patient bill of rights. You would think this list would be obvious, but so many doctors and medical professionals don’t follow these practices. (#5 actually happened to me once, believe it or not, and it almost killed me.) With the exception of the last one, the psychiatrists who have treated me have all (eventually) failed this very basic test.

I don’t want it to happen again, and I figure that I am much more likely to be treated the way I want if I make my expectations clear upfront. If a doctor has problems with this, that’s great, because I learned it upfront without wasting my money and risking my health and my life. If it isn’t an emergency, I’d rather have a bunch of doctors decline to treat me than wind up with someone I don’t want to see.

I’m pretty sure my new psychiatrist will be fine with this, but I’m writing my goals and expectations documents up and sending them to him a week in advance. I’m going to ask him to read both documents well before our first meeting, so we can cancel our appointment if this isn’t okay with him. I don’t want to waste my money on an expensive expert that I can’t work with.

Fundamentally, this is all about one basic principle: Your doctor works for you. A lot of people find medical professionals to be intimidating and feel that they have to do what their doctor tells them to, because the doctor is an expert and you’re not. But the doctor is your employee. You’re the one calling the shots, even if someone else is paying their salary. So if you are able to change doctors, and if you are not satisfied with your doctor – fire him or her, and find a better one. (Though if you want to be tactful, say “I’d like to switch providers” rather than “You’re fired!”)

Your doctor is an expert you’re paying to make recommendations, but you’re the one making the decisions, and you’re the one in charge of your treatment program. If your doctor doesn’t recognize this…find another doctor.