Miss Diagnoses

DeeDee newAnyone who has ever looked up a “serious mental illness” like bipolar disorder has been smacked in the face with dire warnings and frightening statistics about misdiagnosis. If you google my lifelong companion ADD, you’ll see lots and lots of dire warnings and hand-wringing about overdiagnosis. But you won’t run into are dire warnings, frightening statistics, and hand-wringing about repeated, compounded misdiagnoses.

It’s really bad for people with mental health issues to get the wrong diagnosis and treatment. But it’s just as bad for those with somatic health issues to get the wrong diagnosis and treatment.

And it’s very, very easy to get misdiagnosed. Consistently. Repeatedly.

How does it happen? The biggest problem is that myriad conditions can cause psychological symptoms: vitamin deficiencies, endocrine imbalances, chronic stress, and many more. But the main problem, from what I’ve seen, is cost-control driven negligence: major psychiatric diagnoses made on the first 15-to-30-minute visit, often by a clinician without a medical degree. Add in a complete failure to rule out somatic causes — in other words, no testing to verify normal thyroid function and the like — and I shudder to think how many others are being misdiagnosed with mental illnesses they don’t actually have.

Turning back the clock 20-odd years, my first diagnosis, Major Depression, was spot-on at age 13. I recovered, but also medicated it into submission; I’ve never stopped taking antidepressants for fear the depression would return. But the nature of depressions that I’ve experienced since then are fundamentally different, leading me to believe I’ve been on drugs I didn’t need for at least 12 years, potentially handicapping my body’s ability to function without it.

My second diagnosis, Attention Deficit Disorder, was also 100% accurate, even though it was first made by a family doctor (the Internet thinks family doctors can only identify self-diagnosable ailments.) Over the next ten years, another 6 clinicians independently agreed, as did a computerized test, and stimulants help immensely.

But after that, things got weird.

My university health records list Anxiety Disorder NOS, which may well be accurate, but I’ve never been properly evaluated nor treated for anxiety disorders. A number of clinicians have also diagnosed me with Mood Disorder NOS, which is shorthand for “we have no effing clue.”

When everything really went to hell, I was diagnosed with Bipolar Disorder II multiple times. Apparently I just react very strongly to changes in sunlight and have an abnormally high tolerance for sleep deficit, since it now appears that they were all wrong.

When I finally got a decent psychiatric nurse, she suspected a hormonal imbalance. So I weaned off mood stabilizers with great success and started looking into endocrine issues. But to this day, the primary diagnosis on record at that office is Major Depressive Disorder, Recurrent.

In the meantime, another clinician stuck the Borderline Personality Disorder label on my records so my insurance would continue paying for Dialectical Behavior Therapy. That was a complete fiction, a nasty diagnosis levied solely because insurance companies, not doctors, dictate “appropriate” medical treatment in the US. Worse yet, insurance approval wasn’t actually required by my plan, so I’ve been given a stigmatized label that could cause problems in the future due to bad bookkeeping.

A reproductive endocrinologist took about 5 minutes to hear what he wanted before pronouncing a diagnosis of Premenstrual Dysphoric Disorder. He didn’t do proper diagnostic work, didn’t ruled out any other conditions, and despite conflicting evidence, put me on drugs that made me dangerously ill and even crazier. When I cried out for help, he generously offered to shut my reproductive system down entirely. I fired him.

After about two years of this rigamarole, I finally found an “alternative” women’s health option — personalized, evidence-based, and provided by an actual MD. She quickly confirmed my suspicions: I don’t have PMDD, and I’m only certifiable when my hormone levels tank. As it happens, there are specific genetic mutations for PMDD (Val/Val for Val158Met), and medication sensitivity testing already showed that I’m not in that category.

Carefully timed blood tests and sonography confirmed an infertility-related condition called Early Luteal Phase Defect, along with ovarian cysts. In short, my body produces far too little estrogen and progesterone of its own accord and my ovaries look like the Elephant Man’s testes. The shortage of necessary sex hormones creates psychological symptoms that look exactly like a severe mood disorder. The appropriate treatment — supplementing bio-identical progesterone for 10 days per month — is simple, low cost, and low risk, with minimal side effects. It’s also effective: my brain works, cramps are minimal, entire cycle is way more predictable, and emotions are far less extreme.

Thanks to one misdiagnosis after another, I’ve dealt with inappropriate and unnecessary drugs, constant invalidation, and the burden of believing I was insane. After struggling to accept life-altering diagnoses like bipolar and PMDD just to have those diagnoses overturned, I simply can’t trust medical professionals anymore.

There have been a few silver linings. Along the way, I learned that I’m a genetic freak and can’t properly metabolize most pharmaceuticals: information that could save my life someday. I also learned mindfulness and coping skills, worked out some issues in therapy, and recommitted myself to proper self-care. As a result, I’m a lot healthier today. There’s even a possibility of reducing or eliminating antidepressants that I probably don’t need.

But if you’re looking for a moral to this story, I’m afraid I don’t have one. You can consider it a cautionary tale of medical malarkey, but intuition and hindsight seem to be the only way to determine whether your doctors are as incompetent as mine. I can offer only this: if the cure is worse than the disease, you have every right to stop the course of treatment, find another doctor, get another diagnosis…and lather, rinse, and repeat.

© DeeDee and A Canvas Of The Minds 2014. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to DeeDee and A Canvas Of The Minds with appropriate and specific direction to the original content.

35 thoughts on “Miss Diagnoses

  1. I have worked in Mental health as a RN for many years. Insurance companies want a diagnosis before admission into any hospital. It is unfortunate that people get a DX slapped on them after a fifteen minute assessment just so they can be admitted. Without a diagnosis, the insurance companies will not pay a hospital. Bottom line, the hospital wants and needs payment. The potential patient gets a diagnosis they carry with them throughout their life. It becomes a legal permanent record. Unfortunate for them and those who treat them with a false diagnosis, as this is a breach in care and a down right lie, in many cases.

    • Of course, the whole system now relies on classifying illnesses so that doctors can get paid.

      In my case, there’s been no hospitals involved. The practitioners generally have the option of choosing a less stigmatized diagnosis for record-keeping purposes. At least until the insurance company forces them to change it to something maligned in order to get payment. And I have no recourse to get it struck from the record.

      • DeeDee, It’s not only doctor’s getting paid, but the insurance companies will not pay without a diagnosis or criteria for payment.

        Of course, everyone wants to be paid, that is why people work.

        So, it’s more than doctor’s wanting to be paid. Some doctor’s hate the system as much as the rest of us pions working for the system.

        Insurance companies, to my knowledge, on “force” when they don’t want to pay for treatment.

        Sometimes, people are just depressed and need help. The insurance company requires a more intensive diagnosis to treat inpatient.

        I’m sorry that you have been victimized by a complex system that demands an answer even if it is the wrong answer.

        • Yeah, I understand how the system works. That just doesn’t make it right! I wish there were some other way, but until our medical technology and diagnostic methods get a whole lot better, going to the doctor really seems more like roulette than anything else.

    • It is unfortunate, but not irreversible. I know a lot of people who have been given a life-long label, only to eventually stop identifying with it. It seems that for whatever reason, hospitals don’t realize those initial diagnoses become identifying factors for those who are diagnosed. Do you have ideas for ways to get doctors and hospitals to further involve their patients in the diagnostic process?

      • Whether or not I identify with the label, the issue I object to is having it on medical records where it will likely bias providers against me in the future, should they have access to that information.

        Fortunately the Affordable Care Act made it illegal to refuse health insurance coverage based on such “pre-existing conditions” (whether or not they ever existed!) but to the best of my knowledge, that doesn’t mean they can’t jack up the premium price once they see bipolar and borderline on my records. It also doesn’t prevent life insurance companies from refusing coverage or making it unaffordable because of those high-risk diagnostic categories. It hasn’t happened to me yet, but I’ve heard many such stories from others.

        I sincerely doubt that anything I could say would overturn those judgments, but I’m pretty bitter about it right now. I have a lot more experience with being told to shut up and take my medicine than having anyone listen to what I have to say or examine the voluminous evidence I’ve compiled.

      • It is unfortunate that the INSURANCE companies make these choices for hospitals and doctors. Our hands are tied as far as diagnosis’s. And, no the patient can not choose the diagnosis, but they can help by telling the pertinent story, the truthful story and these two resources will help with the right diagnosis.

        Personally, I hate the fact that there are any labels as people mold themselves into the character traits of the diagnosis pattern. This is unfortunate, as well. We are people with problems and not diagnostic traits of labels that follow someone throughout a life. Becoming familiar with a disease process whether psychiatric or medical and focusing in too much on the text book examples molds/makes a person into that shape. It’s like studying a character for a play and then taking on the traits of the focus of that screenplay or story. Our minds adapt to what it perceives as truths for ourselves. So, gaurding ourselves from “too much” of anything is unhealthy. Another example, is watching too much news. We become what we hear and listen to and mold ourselves into what we allow into our beings. It is the same with diseases.

        Anyway, just my observations of others, and self analysis of our frail psyches, if we allow intruders (thoughts that are not necessarily true) to enter.

        • Actually, I’ve found that being fully truthful biases doctors against me. They stop seeing me as a person and start treating me like a liability. They jump to conclusions, make inappropriate assumptions, don’t listen to me, and don’t ask the right questions nor give me opportunity to provide useful information. If I try to stand up for myself, they insult my intelligence and invalidate my experiences by being dismissive.

          And that’s before the insurance companies get involved and decide that the treatments that actually work aren’t “medically necessary” because they cost too much.

          Certainly, some patients assume an identity or are deceptive. I’m deceptive, but in a very limited fashion, and only because I have to be in order to get quality treatment. The doctors taught me that I needed to do that. They didn’t offer me the opportunity to be anything other than a diagnostic label.

          I’ll grant that’s not the case for every doctor, and I’ve apparently had exceptionally rotten luck. The bad doctors do so much damage that it’s hard to even remember the rest. But the only ones who have made a positive difference in my life were the ones who actually listened to me.

  2. This sounds very similar to my story, except the genetic freak part. I was gluten intolerant and didnt know until a diagnosis of Lupus. I had went years with phantom pains that the doctors just wrote off a psychosomatic and prescribed anti-whatever current samples. Trully I was vitamin deficient and had really bad constipation. No more gluten, no more pain and no more craziness. This off course came with my own research and diagnosis.

    • It seems like providers settle on the first obvious diagnosis that they can prescribe something for, but don’t dig any further. There’s a surprising lack of due diligence to try to rule out other causes, and not much probing to find out whether the first diagnosis really fits. If the treatments aren’t working and nothing makes sense, it’s up to the patient to become their own advocate and figure out what’s really gone wrong — which is more than many people can manage, especially if they’re feeling ill. Pretty frustrating.

  3. Thanks for your post. Along with the lack of holistic appraisal, it seems that you were also subject to some stereotyping and assumptions based on your gender and history of diagnoses. Sorry you had to struggle through all of the psychological discord of feeling like “those doctors who are supposed to be helping you” were you letting you down. And I’m glad you were able to find some silver linings. :) Remembering to practice self-love is not always easy.

    • Yep, there were some clear instances of “crazy lady” treatment, especially from the awful endocrinologist.

      I once had a troll comment that I made a mistake by going to psychiatrists for treatment for what appeared to be a mental disorder. I hate to admit it, but he was actually right. The psychiatrists only made things worse.

  4. Great article. I was recently diagnosed as bipolar after a 20 minute conversation with a psychiatrist who immediately put me on mood stabilisers. Before that my diagnoses had been Major Depressive Disorder, which I’ve found to be accurate. But bipolar? I have mood swings and don’t need a lot of sleep but I don’t have crazy mood swings. He was basing this entire diagnosis off of my bad reaction to a medication my pain management doctor gave me (because apparently I have fibromyalgia as well, though I’m not sure I believe that). Anyway, mood stabilisers zombified me so I just quit taking them. Just walked into the psych’s office and gave him the leftover samples and said, “I’m not taking this anymore.” The whole system is SUCH a mess. I feel for you.

    • It really is a broken system. And the hell of it is, once you’ve been diagnosed as mentally ill, most providers seem to think you’re also mentally incompetent and unable to make any sound judgments or observations about your own well-being. My symptoms did look a bit like bipolar II and I couldn’t find any alternate conditions that included the hypomania symptoms. Apparently hormonal disorders can do that, though.

      • Maybe that’s what mine is -hormonal. I should have that looked into. And yeah, I’m not truly thrilled with my psychiatrist OR pain management doc. They both seem less than capable and seem to think I’M less than capable.

        • I know how incredibly hard this suggestion is, but if you’re not happy with your docs, perhaps it’s time to shop around for someone who listens.

          And definitely get the hormones looked into! That can be a significant factor and it seems most doctors are rather misogynistic in the way they utterly ignore the additional complications introduced by the female reproductive system. It’s a nontrivial factor and not a matter of choice. Failing to consider the effects of the endocrine system on symptoms is negligence, if you ask me. But what do I know about these things? ;)

          • I definitely should shop around – it’s just a scary thought. Up until last year, I trusted doctors, now I don’t, lol. But you’re completely right.

            My primary physician is female so I’m sure I can talk to her about checking into the hormonal thing. Thanks for all the advice! :)

  5. I am that freakish anomaly whose diagnoses were pretty spot-on every time. It took my first psychiatrist all of two visits and hearing a bit more of my history to change my diagnosis from Bipolar NOS to Bipolar I, and the anxiety disorder diagnoses that came after. . . Yeah. Though as I think about it, I’m pretty certain Bipolar is the only “official” mental health diagnosis in my medical records, and there it is listed as Bipolar NOS. My primary care, when he does have to list anything regarding my mental health, still lists depression. All of those disparities are attempts by my docs to keep my records as “stigma-free” as possible. They certainly don’t agree that it should have to be this way, but they understand what having all those labels, even when they are accurate, could do to me going forward.

    I guess reading your words has the same affect on me that many others have had — and I think I have actually reacted this way to posts you have written previously. I am both grateful that I have always had wonderful doctors — real, well-trained, knowledgeable doctors who approach the whole of things and are absolutely holistic in their treatment approach, which makes all the difference — and saddened and appalled, because I know how unusual my own experience has been and how much closer to the norm yours is. You also stress a point I wish I could drive home the importance of to everyone who has been diagnosed with an illness, mental or somatic: Advocate for yourself. Do the research. Don’t ever take a doctor’s word, you are your best hope when it comes to getting the right diagnosis and treatment.

    Thank you for sharing this here, I hope others can benefit from your experience and not have to go through even half the hell that you did.

    • Thanks, sweetie – and the hell of it is, I’ve done everything I possibly could to get the best care I could. But the “best” endocrinologist in my area turned out to be an old quack. The only “psychiatrists” in my area don’t actually see patients but just supervise pill mills, and almost no one is taking patients, much less if you’re constrained by what your “good” insurance covers.

      The situation really is appalling. I had no idea how bad it was until I found that I was putting my trust in people who were making things worse for me, over and over and over. No one could or would take the time to figure out what was really going on, unless I was willing to pay out of pocket at exorbitant rates for a private practice psychiatrist who didn’t take insurance, at which point due diligence was a way for her to run up my credit card balance. I’m glad I finally found someone decent, but I truly dread moving and having to find all new providers.

  6. It makes me shudder. Everything I see or hear something like this, my first reaction is to apologize in the name of the wide-world medical community. The status of medicine in North America. Some doctors are a bunch of arrogant pricks who think themselves gods and couldn’t care less about the patients, their feelings and their ailments. And the ones who care, who haven’t forgotten they deal with human beings and not pieces of defective machines you labels on, are hindered by insurance companies and health administrators only interested in optimizing the patients’ visits so they can make more money.

    However came up with the idea that a family doctor should see a patient every ten minutes should have a specially reserved place in hell waiting for them.

    I’m sorry that you, and so many others have had such a horrific experience. Seeking medical help should never be an ordeal :(

    • I’m pretty sure most people don’t go into medicine in order to mistreat people, and a lot of it seems to be the product of a very broken system. I feel like I got really lucky to find my NPP, because I was just being bounced from one pill mill to another; no one else who took my insurance was taking new patients.

      I’m terrified by the fact that when I move in a few months, I have to get at least 6 new health care providers (PCP, women’s health, psychiatry, therapy, ophthalmology, dental). Getting local referrals for a good provider is even more problematic, since I won’t know anyone except my professional colleagues, and I’m not comfortable asking them about a therapist or psychiatrist. Literally every time I start thinking about this for more than 5 minutes, I start having a panic attack.

      • Oy! Best of luck with all that. It does seem like an overwhelming task. Or something that would overwhelm me, in any case.

        And yes, I am sure people don’t go into medicine in order to mistreat people either. What I believe, is that most of them don’t realize what their lack of compassion does to their patients. Most of them don’t even realize they lack compassion. Or the ability to be sympathetic. I am sure they think they are doing a marvelous job. Which I find dangerous.

  7. DeeDee, this was certainly an interesting piece! You’ve made me start to think about my own diagnoses and their potential illegitimacy. Sorry to hear this had to happen to you, but glad to know you’re at a better spot.

    I am hopeful that in the future the psychiatric treatment system will change from the medical model they use now. When someone’s arm is broken, a doctor can have an x-ray taken, cast the arm, and give an appropriate prognosis. The thing about psychiatry and psychology is that those systems rely on the same steps to treat. Observe, diagnose, attempts to fix, here’s the bill. The brain is far more complicated than a bone in the forearm, so why do doctors, hospitals, and insurance companies keep treating it like one?

    Informed choice is something that really needs to be a universal practice. “Here’s what I think about your brain, here’s what I want to give you for it, here’s what it does. What do you think?” Dialogue is so important and it just doesn’t happen enough. Did you find it hard to openly discuss with your doctors what was going on? When did it happen for you, that moment where you realized you had to self-advocate and get more involved? Or was it just the progression of misdiagnoses itself that eventually led you to that place?

    • I basically got treated with no respect, over and over. They literally acted as though I can’t understand what’s going on, or I’m lying/noncompliant/drug-seeking, or demonstrated that they wouldn’t listen to me. Experiencing that kind of behavior makes it hard to even attempt to talk to doctors anymore. I now know better than to give a comprehensive history because it biases them against me. I also walk into appointments with new providers armed with a binder full of medical records, labs, research papers, and other data that makes it very hard for them to just brush me off. Good doctors are actually excited to see that because it means I’m willing to participate in treatment and more than capable of it.

      The tipping point was when I was denied a controlled medication that I’d been on for years, had a very bad reaction to the non-controlled substitute they offered as my only option, and then they didn’t respond when I called to say it was giving me tachycardia and panic attacks. They didn’t believe me when I said I metabolize the medication too fast for a normal dosage in the first place, but later on, gene testing showed that I was completely right. But that incident made it clear that I had to work a lot harder to get better care, no matter how ill prepared I was to do that.

  8. Thanks for writing this. I think a lot of good doctors I know admit that often they’re making guesses when it comes to mental health. The good ones pay careful attention to nuances which narrows down the range of options. The bad ones just don’t seem to care…

    • The hard part is finding a good doctor, I think. The good ones tend to be overloaded, not taking patients, or don’t take your insurance. When you go to a knew doc, it’s hard to know what you’re getting, and it’s easy for them to make things worse really fast.

      To work out this really complicated stuff, it’s taken seeing a practitioner who does 45-minute visits for medication management, not 10-15 minutes. That lets her get to know the patient’s history, what else is going on in their life that may be influencing symptoms, and we can work more cooperatively on treatments. It makes a big difference!

      • Yes I agree. I also think that your word at the end there ‘cooperatively’ is key too. At least in the UK where I’m now based, trying to find doctors who consider health to be a cooperative task in general is not easy. Those that do have that attitude, rather than the ‘I am God’ attitude, are worth their weight in gold.

  9. That’s quite a journey you’ve been on, but I’m going to focus on the fact that you’re in a good/better/at least not terrible position now. It shows a ton of perserverence and fight in the face of what turned out to be bad odds.

    I’m finding myself fortunate that I’ve only bounced around therapists/psychologists once. So far. The horror stories I’ve read, including here, are frightening. Okay, I’m on a second therapist type, also have a psychiatrist pair, and am on four meds… but I think I’m also in a better place than I was a year ago. I can’t say the same for my daughter, though. Most every time I report to SSG about a doctor visit, or therapist’s words, hindsight makes me feel foolish for not having asked the right question or demanded a different or more thorough process. Sadly, I, like most of us humans, am just not trained or knowledgeable enough to ask those right questions, and so am left to trust the individual doctors and trust the system. All the best on your continued improvement in diagnoses, DeeDee.

  10. Not only is your title wonderful, but your topic is timely and totally accurate. The stats are appalling, not just in the UK. There are a multiplicity of physical symptoms that display as depression and thus get misdiagnosed as such. They can range from chronic infections (e.g. Hepatis B or C) or malignancies (including Hodgkin’s lymphoma) to low thyroid. Back here in the States, estimates are that about 5% of 70 million menstruating women meet the criteria of PMDD. This would be 1 in 20, or 3-4 million women. [They did the math there, not me, so it should probably be pretty good.] Yet nowhere NEAR that number have been actually diagnosed. And for a real kicker, Singh et al (2006) write, “As per the survey taken by the National Depressive and Manic-Depressive Association (DMDA), 69 percent of patients with bipolar disorder are misdiagnosed initially and more than one-third remained misdiagnosed for 10 years or more.” Nice, right? Keep the topics coming–we can’t let people lose sight of the mis-diagnosis, mis-management, and mis-treatment that so many people with mental health issues undergo.

  11. When I had my first “major breakdown” and sought a mental health professional for the first time, I was slapped with Bipolar NOS just after my 15-30 min visit. Eh. You know the rest…

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