Concerns Over a Specialist’s Citation in My Medical Records
I am seeking feedback from medical professionals regarding an experience I had. Recently, I had an appointment with an endocrinologist after my laboratory results indicated the possibility of an autoimmune disorder. My symptoms aligned quite closely with this condition, yet I faced challenges in getting the necessary referral. My primary care physician believed I should consult a specialist, but an initial denial was issued for the referral because some lab results were only marginally elevated, leading the reviewers to conclude the disease wasn't severe enough to warrant treatment. Nevertheless, I persisted in advocating for the needed referral, with support from my doctor, and ultimately, I was able to secure a consultation. However, upon arriving at the specialist's office, it felt as though they were predisposed to their conclusions prior to our discussion. During the appointment, I was informed that my condition hadn't progressed to the point of producing noticeable symptoms and that we would continue monitoring through periodic blood tests before considering any form of treatment based on future lab results. What troubled me was that when I sought clarification about alternative explanations for my symptoms, the response I received was to consult my primary care physician, as these issues supposedly fell outside the endocrinologist’s expertise. Nonetheless, these symptoms pertain to the autoimmune disease in question, leaving me feeling disheartened and as though something was amiss. Later that evening, I received a notification indicating that my visit summary was available, prompting me to review it. The healthcare provider had been quite comprehensive and included substantial information, which I found to be logical, except for one aspect. They referenced an academic study to justify their reluctance to initiate treatment for my illness. It struck me as unusual that a physician would incorporate a citation into my clinical notes, as I had not encountered this practice before. Furthermore, the statistic cited came from a study that was 15 years old and primarily outlined the risk of disease progression in relation to various lab values. Given that my lab results still place me in a high-risk category, along with my ongoing symptoms, this citation seems to lack relevance and support for their decision. I intend to pursue a second opinion, but I would appreciate any insights on this situation. It appears to me that the provider might not be up-to-date with the latest research or possibly lacks the willingness to delve deeper into my case.
Answers (1)

8/24/2025, 7:21:16 PM
OpenHealth AI
It sounds like you’ve had a challenging experience navigating your healthcare and advocating for your symptoms. Your desire for clarity and effective treatment is completely valid given the complexity of autoimmune conditions.
Main Points: You faced difficulties obtaining a referral, felt dismissed by the endocrinologist, and were concerned about the relevance of an outdated study cited in your medical records. Seeking a second opinion is a sensible next step.
Explanation: In autoimmune disorders, it’s crucial for patients to feel heard and to have their symptoms taken seriously, even if lab results appear marginal. Your experience suggests there may be a communication gap between your symptoms, your lab results, and the specialist's assessment. The use of citations in clinical notes is rare but not unheard of, and it reflects an attempt to base clinical decisions on scientific literature. However, the relevance and recency of that literature are vital for individualized care, especially with evolving understanding in fields like endocrinology.
Next Steps:
-
Seek a Second Opinion: Approach another endocrinologist or a specialist experienced with autoimmune conditions. Choose someone known for their thoroughness in evaluating complex cases. Prepare to provide all relevant medical history and symptom details to give them a complete picture.
-
Document Your Symptoms: Keep a detailed record of your symptoms, including their frequency and severity, to share with the next specialist. This will help provide context that may not always be evident in lab results alone.
-
Inquire About Current Research: When consulting with the new specialist, ask questions about the basis for treatment decisions and what recent studies or guidelines they are following. This may help bridge any gaps in your understanding and reset the decision-making process.
-
Communicate with Your Primary Care Physician: Share your concerns and experiences with your primary care physician (PCP) after your second opinion. They can advocate for you with specialists and ensure your overall healthcare strategy is coherent.
-
Stay Informed: Educate yourself about the specific autoimmune condition suspected. Reliable sources include the American Autoimmune Related Diseases Association (AARDA) or the National Institute of Health (NIH). Knowledge can empower you in discussions with your healthcare providers.
Keep advocating for your health, and remember that it’s important to find a provider who listens to you and addresses your concerns holistically. If you need more information or support, feel free to ask.
Related Questions
Challenging Pain Journey with Nerve Involvement
Greetings! My name is Philip, and I recently celebrated my 20th birthday. Over the past several months, specifically since March, I have been grappling with significant pain affecting various parts of my body. This is my inaugural post, and I appreciate your patience with the length as I share the entire narrative and complexities regarding my situation. I want to split this information into two sections: Orthopedic Concerns (1) and Rheumatological Concerns (2). (1) To provide some background on my physical condition, I currently weigh 150 lbs and stand at 5'11" tall. I started weightlifting in October 2022, and within a few months, I significantly increased my weight and strength, jumping from 143 lbs to a peak of 167 lbs by late February to early March. My workout routines were intense, often lasting six days a week without breaks, leading to excessive volume, which I learned was not optimal. In late November, I began working in the kitchen doing various tasks, including dishwashing and heavy lifting, and ceased this employment in early-mid July. In mid-December, I also started practicing Jiu-Jitsu, which soon became one of my greatest passions, providing me mental relief during a challenging time. However, about a month into my Jiu-Jitsu training, I began experiencing discomfort in my left forearm and elbow, primarily exacerbated by certain weightlifting techniques and grappling. Despite the pain, I was reluctant to interrupt my activities, opting for regular doses of Ibuprofen instead. By March, the discomfort worsened, affecting both elbows: my left elbow experienced intense pain, and there was now tenderness in my right elbow. Activities became increasingly unenjoyable, and the pain became a constant companion, compelling me to consume significant amounts of Ibuprofen daily (between 600-1000mg). Reluctant to pause my routines, I finally sought orthopaedic advice when the pain became unbearable. After undergoing x-rays, my doctor diagnosed me with tendonitis and recommended rest. After approximately 10 or 11 days without exercise, my elbows felt much better, and I prepared to re-enter the gym. I believed I was starting off slow, but after just two sessions, the pain returned. Another extended rest didn’t yield the same relief this time, and I returned to the orthopaedic for further assistance, leading to a referral for occupational therapy, which proved ineffective. Matters escalated by early June as I experienced neck and upper back pain along with ongoing numbness and tingling in my hands and fingers. Sleeping at night became a challenge as I struggled to find a suitable position that wouldn't irritate my elbows or neck. My doctor theorized about potential nerve involvement and planned an EMG/NCS but decided to conduct further assessments of my elbows first. He prescribed me physical therapy for bilateral cervical radiculopathy and arranged MRIs for both elbows, along with a seven-day Medrol (methylprednisolone) steroid regimen. Simultaneously, my pediatrician ordered several blood tests to exclude autoimmune conditions; all results came back normal. The steroid pack provided substantial relief, especially for my elbows, but the benefits diminished shortly after completing the treatment, and my prior symptoms returned with a vengeance. The MRI revealed lateral epicondylitis (tennis elbow) with mild common extensor tendinosis and signs of ulnar neuropathy in the cubital tunnel on the left elbow. The right elbow reflected similar ulnar issues, leading my doctor to proceed with the NCS/EMG. The electrical study indicated that the nerves in my arms and hands appeared intact, but I likely have a pinched nerve at the C5-C6 level, creating irritation. An x-ray of my cervical spine showed normal results. After a subsequent MRI of the neck confirmed the absence of significant issues, my neck symptoms improved slightly, but I continued to struggle with my elbows and began feeling pain in my lower back and hips. Certain positions, especially while driving, triggered notable pain radiating into my legs and feet. A lumbar spine x-ray returned normal too, prompting an MRI for further investigation. I was also referred to a physiatrist skilled in acupuncture, who evaluated my symptoms and suggested a pricey elbow brace. Skeptical due to previous unsuccessful attempts with other braces, I expressed hesitation about purchasing it. A follow-up is scheduled for mid-September, with acupuncture appointments set for October. At this point, I continue to experience discomfort in my elbows, neck, upper back, and lower back/hips. The "shooting pain" has become infrequent, mostly resulting from prolonged poor posture. Although the meloxicam helps manage elbow pain, its effects do not extend to my neck or back. I follow a daily stretching plan and have shifted my PT visits due to a busy work schedule. Post-stretching provides some relief, but it doesn’t seem enduring. I still sleep with pillows underneath my knees and use a towel roll for neck support. I remain unconvinced that the issues with my elbows and back/neck are entirely separate, as I often feel tension radiating to my neck, tightness in my chest, muscle knots in my back, and discomfort flowing into my shoulders and triceps. I have an MRI for my lumbar region scheduled today (August 25), followed by an appointment with my spine specialist. (2) The reason for my rheumatology visit stems from a notable family history of autoimmune diseases such as Crohn's disease, rheumatoid arthritis, and sacroiliitis. After evaluations, I underwent blood testing and received a referral for an x-ray focused on my sacroiliac joints. My tests indicated elevated creatine kinase levels (218, exceeding the normal maximum of 200), while another assessed rheumatoid factor found normal levels. The HLA-B27 test for ankylosing spondylitis returned negative results. My recent follow-up with the rheumatologist five days ago revealed no significant abnormalities in the x-ray. Additional MRI tests for my sacroiliac joints and further blood tests for dermatomyositis and polymyositis were ordered. A follow-up appointment is scheduled in three weeks to discuss the findings of both tests. If anyone has insights or similar experiences to share regarding any of the topics mentioned, I would be incredibly grateful. I feel disoriented and eager to find ways to improve my situation, longing to return to activities I cherish. Thank you to anyone who takes the time to read my story or provide guidance; it truly means so much to me.
Could These Be Simple Ingrown Hairs Instead of Herpes?
(18M) Today, I underwent a swab test, and my physician expressed a strong belief that what I’m experiencing is merely an irritation from shaving, as I had groomed myself a few days earlier. I was initially quite anxious when I discovered some fluid-filled bumps at the base of my penis. In my nervousness, I ended up popping them, and they now resemble typical ingrown hairs. Still, I would appreciate hearing others' perspectives on the matter. My girlfriend has undergone two tests for herpes, both blood and swab, and both returned negative. I’ve faced a similar situation before, had it tested, and those results were negative as well, leading me to believe it’s not herpes. I’m curious to know your thoughts. Thank you!
Unexplained Freezing Episodes: Seeking Insight
Hi there! I’m a 30-year-old woman, standing at 5 feet 4 inches and weighing 108 pounds. For the past few years, I’ve experienced sudden episodes of fear, but it’s become notably more frequent over the last month or two. Friends and family have pointed out that I sometimes freeze, displaying a terrified or distressed look, yet I have no recollection of these events afterward and simply continue on as though nothing occurred. What could be the underlying issue? I appreciate your patience with my lengthy message! These fear episodes first began a few years back. I recall a moment when my family mentioned I hadn’t had my blood tested, prompting a visit to our family physician for a blood draw. After the nurse finished the procedure, she rushed to get me a drink—either milk or juice, I can’t quite remember. Initially, my mom and I were grateful for her kindness until the nurse observed how pale I looked, prompting my mom and I to realize something was off. Later that day, I developed a fever, which eventually subsided, but since that incident, I’ve been experiencing these fearful moments. Typically, these freezing episodes last under a minute. I’ve somewhat acclimated to them, allowing me to push through daily activities. For example, I can generally keep driving or engage in routine tasks. However, when I’m playing video games and one of these episodes strikes, I often can’t remember the controls, even though I know it’s just a transient fear response. It’s bewildering; I might be aware of the fear, yet my mind goes blank regarding the game. During these times, I frequently experience goosebumps. If someone is nearby, I’ll often ask them to feel my pulse, and they usually notice that my heart rate has increased. To complicate matters, my blood sample ended up being deemed unusable, so we never received any test results. Early on, my family was understandably worried about these incidents and took me to the emergency room. However, the ER staff assessed me and said I was fine, without addressing any issues related to blood samples. I returned home with no additional answers. At one point, I learned that Ashwagandha and magnesium supplements might support those dealing with panic attacks or anxiety. I began taking magnesium daily and opted for Ashwagandha on mornings when I didn’t have time for breakfast. Interestingly, these supplements seemed to lessen my fear episodes for a while, although I noticed that their frequency increased during my menstrual periods. Recently, though, I’ve found myself freezing again, sporting a frightened or distressed expression. Others around me have noticed these spells and bring them up after they occur, but I have no memory of the experiences. I’ve asked them to pinch or lightly hit me when they see me frozen, and they’ve confirmed they do so, yet I remain unaware of those moments. I plan to seek out a new physician soon. My current family doctor has a notably low rating of 1.4 stars on Yelp and 1.5 stars on Google, while the ER I visited has a mediocre 2.0-star rating. I'm eager to find a more suitable doctor. If anyone has experienced something similar or knows a good recommendation, it would be greatly appreciated. Additionally, I’d like to clarify a common misconception: when I share my story, some people jump to the conclusion that I have a fear of blood. That’s not the case. These moments can happen completely independent of blood, and I usually do not experience general anxiety or fear regarding anything else.
Inquiry Regarding Rash on Child's Leg
Dear Doctors, I would like your insight on a rash affecting my son’s leg. He is a 22-month-old boy weighing around 25 pounds and is generally of average height. Currently, he is not on any medication apart from Lotrimin, which he used for a short duration of a few days. There are some fluid-filled blisters present. The first image reflects the rash as it appeared today, while the second image captures it from Thursday. The rash is localized to his leg and knee area. Initially, I suspected it might be fungal and applied Lotrimin, but my certainty regarding that diagnosis has diminished. We have recently dealt with a case of Hand Foot Mouth disease, but he has been completely recovered for a few weeks now. I consulted his pediatrician the same day the rash emerged, but they were unable to provide a definitive explanation, suggesting it likely isn’t related to HFM or molluscum contagiosum. They recommended that I continue with Lotrimin if I wished, though I am beginning to doubt its efficacy. There are no accompanying fevers, and it doesn’t seem to cause him any discomfort. Additionally, there haven’t been any recent changes in detergents or foods introduced to his diet. I first noticed the rash a few hours into the morning. What do you think could be causing this?
Teenage Cognitive Challenges
Greetings! I’d like to talk about some cognitive challenges I've been encountering during my teenage years, specifically between the ages of 13 and 18 (I prefer to keep my exact age private, so I’m sharing this range). Over the past couple of years, I've noticed an increase in forgetfulness, mental fog, and trouble focusing. These symptoms seem to intensify around the time of my menstruation. I maintain a nutritious diet, engage in regular physical activity, and ensure I get around 7 to 8 hours of sleep each night. Moreover, I supplement my nutrition with a multivitamin. Despite these healthy habits, my memory disturbances have become more pronounced unexpectedly. It almost feels like I might have ADHD, although I can't quite identify it clearly. The mental fog I experience mainly affects my short-term memory. For instance, I often find myself forgetting material I covered in school or misremembering lyrics to songs I've heard repeatedly. What do you think could be the cause of this? Is it possible that hormonal factors are at play, or should I consider discussing these issues with my parents and scheduling a visit to the doctor?