Dr. Michelle Zook is a board-certified Internal Medicine physician at Twin Health, a precision treatment program focused on reversing and preventing chronic metabolic diseases. She received her medical degree from Georgetown University School of Medicine and has been in practice for 15-plus years. Dr. Zook has additional training in functional medicine from the Institute for Functional Medicine and has taken courses on longevity and wellness through the American Academy of Anti-Aging Medicine.
Over her years of practice, Dr. Zook has come to enjoy the detective work involved in complex cases and has utilized her additional functional medicine training to make a greater impact than ever before.
1) Doctors look for “horses” instead of “zebras” because common conditions (“horses”) occur much more frequently than rare ones (“zebras”). This is based on the principle, “When you hear hoofbeats, think of horses, not zebras,” which guides many physicians first to consider the most likely explanation for a patient’s symptoms. It’s a practical approach designed to diagnose and treat the majority of patients efficiently, but it can potentially overlook those with rare or atypical conditions. When should someone begin to consider they might be a zebra rather than a horse? Can you share your process for ruling out more common diagnoses and starting to consider less common or rare ones?
If someone’s seen multiple practitioners and they haven’t gotten a clear answer and official diagnosis, especially if their symptoms aren’t getting better on their own over time—or if they’re getting worse over time—that’s when someone should consider that they might be a zebra. That’s when I personally would start to go down that road and do a more in-depth evaluation. I enjoy exploring these possible zebra cases and probably would on every patient if it were practical. But as you insinuated, it’s not a practical approach in this day and age of healthcare. So, usually, the things that will send me down that road are if I’m seeing someone either for the first time or if they have a new diagnosis or new symptoms.
First and foremost, I will rule out anything imminently life-threatening. That is always the first thing in the back of my mind when I see a patient: Are there alarm symptoms that might indicate something life-threatening or debilitating for that patient? Once that assessment is out of the way, I look for other unusual symptoms that don’t fit a particular pattern. Examples of unusual symptoms I look for might be unintentional weight loss, night sweats, bone pain, pain that comes on at an unusual time, such as the middle of the night, uncommon skin changes, and so on. If any of these are identified, they might lead me to explore uncommon scenarios a bit more quickly than I would otherwise. If nothing unusual is present, I do typically approach the next diagnostic steps from a more horse perspective.
If I’m in person with the patient, I rely on a good physical exam. I will also use lab tests or imaging when appropriate to further tease out a proper diagnosis. I also read through their medication list ahead of their appointment and then keep that in mind as I discuss their medical history with them. If they’re telling me their medical history, and they say that something has gotten better, I think about the underlying mechanism of action of any current medications. Is the medication addressing an underlying root cause of their symptoms, or is it just masking their symptoms to some degree? Alternatively, is a medication actually causing symptoms, and can we get the patient feeling better by removing the medication? This type of investigation goes both ways.
2) As you have developed your approach to medicine, how do you navigate between using recognized clinical guidelines and considering exploratory measures when more unusual symptoms and/or conditions are presented and persist?
I really appreciate the guidelines that are available to the medical community. I know that a ton of work goes into creating them. They can be really helpful in some of the more straightforward cases, especially when you’re early on in your career and there hasn’t been a lot of time to translate what you have learned in medical school, residency, and actual patient care. But, I will say that it’s hard to keep those guidelines current because there’s constantly emerging science, which is why guidelines usually get revised every few years. So in between those revisions, new science is coming out that may be more applicable to your patient and is not part of a current guideline.
The other thing is that these guidelines can’t cover every possible scenario that will be thrown at you. So when that’s the case, it’s really important to use your experience, what I call your clinical “gestalt,” to tease things out a little bit better and to approach the case from that regard. A strategic approach that looks at the big picture becomes helpful because some of the work requires intuition. You can get information by being present with someone—a better sense of what’s going on. You also get a better sense of how they will respond to your recommended care. For instance, if I get the sense that someone won’t really respond to the standard care, or if I know they’ve already been down that road and haven’t found any benefit, that’s when I will dive into my less conventional armamentarium. I have additional training in functional medicine, which has given me exposure to a whole new way of looking at the body—more of a systems approach rather than relating symptoms to specific body parts. It’s also exposed me to more specialized testing that isn’t available in a conventional medical practice. I have found that these additional tools have been extremely beneficial for many, many of my patients. They would have never seen the benefit of these tools using a more standardized approach. You don’t just have to see a functional medicine practitioner for these benefits. There are so many practitioners with their own unique tools and expertise that can help patients who may not fall within that standard medical care model.
Another important thing to remember is that just because something isn’t considered a “standard of care” in medicine doesn’t mean there isn’t science backing its benefit. So, with that in mind, I’m always careful to try to combine new science with expert opinion before I implement any nonstandard medical care, so that I’m at least more confident that I’m not going to cause any harm to my patient. I also make my patient aware that this isn’t standard care, but these are the potential risks and benefits so we can share in the decision-making.
3) What advice do you have for patients in maintaining their overall well-being and quality of life while they’re pursuing a diagnosis of an illness of unknown origin and/or they’re dealing with a complex condition?
I feel for patients going through this, because I know it can be extremely frustrating and exhausting when you’re working your way through a healthcare system. You’re seeing multiple providers who can’t give you an answer. I think many patients feel like so much is out of their control, and they’re at the mercy of others to understand what’s best for them—and sometimes, none of that works. Of course, this can be really disheartening. First, I believe it’s really important to focus on what you can control that might improve your health—to the degree that’s possible—while searching for answers. I’m referring to things like nutrition, sleep, physical activity, stress reduction, and something a lot of people don’t think about: fostering meaningful relationships with friends and family. Social connection is a vital component of our health that often goes overlooked.
Another important thing to consider is seeing a therapist. So there’s a lot of trauma and emotional distress going through this type of experience (your healthcare journey). I think many people underestimate the strain this puts on your psyche, and your nervous system in general. So having a way to address this stress can be really, really helpful, and using a therapist—I have seen a lot of benefit.
There are often a lot of community resources available for this—so various religious organizations, nonreligious organizations, neighborhood groups, and things like that. There are lots of resources if you go looking for them. Start online and research the right organization for you. It is helpful to get an understanding of what they’re all about and if they would be a good fit for you—asking friends and acquaintances if they have any knowledge of anything available in the community, or any knowledge of these organizations, to give you an idea about what might be helpful. I know many employers now offer employee assistance programs. Many are limited in how many sessions you get, but they can at least get things started and give you some helpful coping tools.
There are also things that you can do on your own such as gratitude journaling, breathing exercises, and meditation. These can help calm your nervous system down and promote a sense of overall well-being.
4) What should patients be cautious of once they find themselves in the throes of a “diagnostic odyssey” (the time between when symptoms appear and their disease is properly diagnosed)? Are there dos and don’ts?
This is a great question. First and foremost, do not let your imagination get the best of you! The unknown can be scary. I see a lot of patients letting their imagination get the best of them, and they start thinking of the worst possible scenario. That in and of itself can negatively impact your physical and mental health. I would also caution people not to rely on Dr. Google to give a prognosis. Admittedly, there is some great information on the web. It’s tempting to go down that rabbit hole, but to do so, you must know how to differentiate reliable from unreliable information, which can be extremely tricky. Even I sometimes have difficulty in that arena. Suppose I’m unfamiliar with a certain website or organization. In that case, I might find their information interesting, but I know I have to do my due diligence and investigate where that information is coming from. It’s probably better to rely on your medical team for medical information unless you’re someone with a really solid research and science background.
I encourage people to maintain hope. The answers will come, so try to keep a positive attitude. It probably would also be a good idea to have what I call a “captain of your ship”—somebody who can oversee everything going on with your medical care. Far too often, patients in the throes of this diagnostic evaluation have multiple specialists all stirring the pot. They have all these hands in the same pot, and none of them are communicating with each other. This often leads to duplicate testing. I can’t even tell you the number of times I’ve seen the same test performed on a patient by multiple providers, all within just weeks of each other. I see duplicate testing. I see missed information, which can lead to unintentional medical errors. So, having one person overseeing your care and communicating with your specialist can be extremely beneficial, and it helps.
One environment where I see this working is in a larger healthcare system where you see all of your specialists within the same healthcare system. So, for example, this worked fairly well when I’ve done stints at the VA hospital. For most people who are going to a VA hospital, all of their care has to be done within that system. So, it’s very easy for the primary care provider to access all their information in one spot. You can get all their medical information. You can see all their medications in one place. You can see all the labs in one place. You can see all the notes in one place, making care more streamlined. But that is not the norm in the greater world of healthcare. Unfortunately, bigger systems have their downfalls, too. So there’s no perfect system.
5) What strategies would you recommend to patients who believe they might be a zebra in effectively communicating their concerns to their healthcare team? How can one balance the need for persistent advocacy with the risk of becoming perceived as a “difficult” patient?
I think what these types of encounters can do is put patients in an attack mode, where they go into all their future encounters on the offensive, which is understandable. Some not-so-great things happen in the medical field and during patient visits. It can be human nature to react that way when frustrated, but I would highly caution against it. Most practitioners, especially when seeing somebody new, will not be receptive to that approach. That’s the sort of approach that will likely give the impression of being a difficult patient. So trying to avoid coming off as confrontational, I think, is helpful. That said, don’t be afraid to be persistent and ask questions, especially if you need clarification or if something doesn’t make sense. You can challenge somebody in a nonconfrontational way, and that’s perfectly fine. Trying to go into every new encounter with a positive outlook and with the hope that things will go well is important. I think also keeping in mind that the vast majority of healthcare workers went into medicine to help people get better. If you can trust that’s what your practitioner is trying to do, and you can build a good rapport with them, that can go a long way in getting effective medical care.
To help patients better communicate their concerns, their symptoms, and/or their history, one thing that I have seen that can be helpful is to prepare for your visit by writing down a timeline of events—things like when your symptoms started, how things progressed, and when certain interventions and evaluations happened. It can also be helpful to weave in life events that may have happened over that time (that you may not think about otherwise). So things like a death in the family, surgery, a severe illness, a car accident, a bad breakup, or any big life event, because a lot of people don’t realize how much these life events can negatively impact their health. They can be a trigger for that switch that’s flipped your health. So keeping these things in mind, and even certain medications you’d been on in the past (e.g., antibiotics for a long period), can be really insightful and helpful for the practitioner.
Often, I find that it’s enlightening for the patient as well. They may not realize something important until they write it down, or really stop and think, “Oh my goodness, this all started happening after this…” Or, “This correlates with this thing in my life,” and then they have this light bulb go off in their head, and they get a better idea of what might be the root cause. It’s important to acknowledge here—it will be really hard for a practitioner to read through an entire timeline during the visit and still have time to ask their own questions and do a proper evaluation. So it may be something you can come prepared with, a document they keep and evaluate after your appointment. Or you could even check with the office to see if they would accept it before your appointment; maybe your practitioner will have a chance to look at it beforehand. If you can make it succinct and easy to follow, they can at least peruse it during the visit and pull out some of the main points to see if anything jumps out at them. That can be really helpful.
Having a clear goal in mind for what you want to accomplish from your visit (or future visits) is important. Don’t be afraid to communicate this with your practitioner. I know that can be hard for some people. I think a lot of us have a hard time advocating for ourselves. If so, maybe bringing a friend or a family member to the appointment to advocate for you can be helpful. Just make sure that your person can approach the situation from a diplomatic perspective and, again, not come to the appointment confrontationally.
It’s important to be realistic about your health, especially if something’s been going on for a very long time; there could be some underlying damage that has been done that’s permanent. Although I’m someone who tries to maintain hope and be optimistic that we’ll figure things out, get things reversed, and get you all better, there will be situations when that’s not possible.
I think the more you have time with somebody—for instance, the more time I have to build a relationship with my patient—the more I can answer questions like, “Are these realistic goals for you to have?” I don’t think that’s something that can necessarily be determined at a first visit, but maybe if a patient were to say, “This is my goal.” An appropriate response from a practitioner would be, “That is an amazing goal, and I will do everything in my power to get you there, but you know it may not be possible in this situation.” There may be residual symptoms and long-term unfortunate issues, but hopefully, most will be corrected, or at least improved.
Finally, as implied above, it’s important to bring up lifestyle, social, and behavioral factors that may impact your health. Your practitioner may not inquire about things like nutrition, exercise, emotional stressors, relationships, etc.—not because they don’t care, but because these things weren’t emphasized as much during their training as equally important factors in someone’s health (which they indeed are). There may not be time to go into all of these factors at your first couple of visits, but the hope is that you will see your practitioner fairly regularly and can slowly weave these details into the conversation over time.