Getting Answers: A Patient's Guide to Discussing Unexplained Symptoms with Your Doctor
One of the most rewarding parts of being a primary care physician is when I am able to work with a patient to help them find answers to unexplained symptoms they have been dealing with, sometimes for years! Often patients tell me that they have struggled to find a doctor to help them or that previous doctors have dismissed or minimized their symptoms, or have not recommended any additional work-up after initial test results were normal.
There are many factors that make it a challenge to get answers for unexplained symptoms. The healthcare system in the US is not well-designed for the kind of care that is required to get to the bottom of these symptoms. Health insurance covers only very short visits that are limited to 1-2 problems per visit, leaving little time for patients to be able to share all of the relevant information about longstanding symptoms. The fee-for-service model also leaves no time for doctors to spend thinking about difficult cases, reading to learn the best next steps when the initial work-up is negative, or researching novel approaches when the basics are not working. As a result, doctors often end up referring the patient somewhere else if they do not immediately know the answer. It is difficult to coordinate care between different doctors and health systems because they often are not able to easily share information, so often the same tests are repeated multiple times and no new information is learned, and the patient is left wasting time and money on multiple appointments and tests without getting any closer to a diagnosis or treatment plan that will help. In the worst cases, the patient is dismissed as a malingerer or the symptoms are labeled as psychiatric when no one can find an answer through testing. The system is incredibly frustrating for both patients and doctors, and it often leads patients to seek answers from alternative practitioners. Unfortunately among these alternative practitioners are many individuals who are selling tests, treatments, or supplements that are at best useless and expensive but at worst actually harmful.
I absolutely do not blame patients for seeking answers wherever they can, especially when the healthcare system has failed them. I think it is important to give patients the tools and resources they need to work with the system and see qualified professionals, get real answers, and avoid these snake-oil salesmen.
So what is a patient to do when they are have unexplained symptoms and are not getting an answer from their doctor(s)? Here are my tips to make the most of the system we have, and how to avoid the snake-oil!
Come prepared to your doctors’ appointment: Make sure you are scheduled for a problem visit, not a physical or check-up, so that you are scheduled appropriately in the correct time slot and there will not be confusion about billing. Arrive 15 minutes early to make sure you are checked in and all paperwork is completed so you can be seen on time. Bring copies of all of any lab work or other testing that has already been done. Make a list of the symptoms that you are concerned about and write out a general timeline of when they started, any factors that make them better/worse, and any other information that you think might be relevant or helpful. If there are specific conditions you are worried about based on your family history or Googling or social media, write these down too. If you have already been diagnosed with any medical conditions, write down all of the diagnoses you have. Bring a list of all of the medications (even over the counter!) and supplements you are taking including the doses and what you take them for- even better, bring the bottles!
Ask questions: Ask what the doctor thinks are potential causes of your symptoms (this is called the differential diagnosis) and what they think is most likely. If the doctor recommends testing, ask questions to make sure you understand what is and isn’t being tested and how this will move your plan forward. If tests are being done that you have already had in the past, make sure you understand why they need to be repeated. If there is a test you were expecting to have ordered that is not being recommended, ask questions until you understand why. Sometimes patients feel doctors are gatekeeping certain tests, but often the issue is that the test will not give the answer that patients expect or may introduce confusion, or the cost of the test is significant and they want to make sure it is truly necessary before recommending it. Always ask for copies of all your test results and office notes after each visit for your own records (many patient portals now provide these automatically). If you feel dismissed or that your questions are not being answered, you always have the right to get another opinion! More on that below.
Avoid doctor-hopping: It is important to feel that you are seeing a doctor you can trust. Once you find that doctor- stick with them! The more you switch between doctors, the more likely you are to generate confusion and misunderstandings, not to mention increased costs and unnecessary duplication of testing. Every new doctor you see is starting from scratch and it can take time to process through all of the information, think it through, and make a good decision about next steps. When you switch between doctors frequently, this increases the amount of information the next doctor has to parse through, and you are likely not going to get a more informed opinion at that first visit. In fact, because they are starting from scratch and missing information, they may end up contradicting something you were previously told! If you continue to follow-up regularly with the same doctor, they will understand you and your story more deeply, be able to continue thinking about it between your visits, and will be more likely to come to an answer that fits. One of the reasons I love practicing in the direct primary care membership model so much is that it allows me to spend more time with patients and build a relationship with them over time. As I learn their story, often we are able to find answers that are relatively simple but just not obvious, and would have been impossible to figure out without multiple conversations over time.
Be patient: Understand that it can sometimes take a long time to figure out the cause of unexplained symptoms. Often these are symptoms that have many possible causes, and sometimes there may be a combination of factors affecting the symptoms that can take a while to tease out. Often doctors do not test for every single possibility right away, this is not cost-effective or practical and can even cause confusion or misdiagnosis. We try to rule out the most dangerous/serious causes and confirm the most likely causes first and then work our way through the list if the answer is not clear. If you are seeing a doctor that spends a lot of time with patients thinking through these things, especially in the insurance-based system, it is likely you will have to wait a while for an appointment and that the doctor will be running late on the day of the appointment. Thankfully, in the direct primary care model we are able to schedule patients for as long as they need and keep availability for our members, so we can do all of this and still run on time in clinic.
Steer clear of snake oil: There are some conditions where modern medicine does not have all of the answers, and when the healthcare system has let you down I can totally understand the decision to look outside the box for help. If you decide to seek out help from an alternative practitioner, be aware of these red flags:
They do not hold a license that is regulated by a state or national licensing board. This means that they have no accountability to anyone to ensure they are practicing in a way that is safe and effective, and no one will hold them accountable if they harm you.
They do not hold an educational credential that qualifies them to diagnose and treat you. Educational credentials ensure that you know the person treating you has at least a minimum level of background education in the field of medicine in which they are advising you. Some people may have doctorate level education in another field, but this does not mean that they have enough knowledge and understanding of medicine to diagnose and treat. Some people are very sneaky about this and prominently display that they are a “doctor” on their website but hide that their doctorate is actually in something else, in which case they should only be advising you on conditions and treatments directly included in the scope of that credential. For US medical graduates, the credential that medical doctors should have is MD or DO. Some practitioners are qualified to diagnose and treat only under the supervision of or in collaboration with a physician, if this is the case always ensure that this physician is available for you to directly consult with if you have questions.
They order testing that is not offered in the mainstream healthcare system or is proprietary/done in their office, and they directly profit from it. Many tests offered by alternative practitioners are not validated by high-quality clinical research and do not provide accurate or useful information. If they recommend this kind of testing, ask “what percentage of the cost of this testing is profit for you?” If they are profiting directly from testing, you should ask yourself whether they are truly able to provide an unbiased recommendation, especially if the results of that testing will guide their recommendation to you for a treatment or supplement that they also sell and profit from.
The recommend a treatment or supplement that is proprietary/only available for purchase directly from them, especially if they are not able to provide you with a full list of ingredients including doses. Again, these recommendations are likely to be biased if they directly profit from selling this to you. If you cannot get a full list of ingredients, this is especially dangerous because it will be very difficult to know the safety of these ingredients when taken with other medications that you may be taking. Supplements are not regulated by the FDA and there are many cases every year of hospitalizations and serious harm from supplements that contained high doses or dangerous combinations of ingredients, or even adulterants such as hormones and other drugs. If you do choose to take a supplement or treatment offered by an alternative practitioner, make sure that they can provide you with an explanation of how it will work to help you, and a list of potential side effects, safety concerns, and medication interactions. If they say there are no risks- this is a big red flag because there are very few things that are completely risk free.
I hope these tips were helpful! If you have other questions or comments on these tips, please leave a comment below. If you are looking for a doctor to help you figure out unexplained symptoms- this is what we love to help our patients with at Vida Family Medicine! We are accepting new patients in the Houston area and all throughout Texas. Visit our website or click here to schedule a meet and greet call with our staff to learn more and decide if we are a good fit for you.
