Version May 2024
INTRODUCTION — This topic was written by an individual patient diagnosed with iron deficiency anemia. It is intended to offer clinicians insight into the experience of a single individual from that individual's point of view. This description of a particular patient's experience is not intended to be comprehensive or to provide recommendations regarding diagnosis, treatment, and/or medication information. It is not intended to be medical advice or to be a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances.
For related clinical topics, please see:
●(See "Iron deficiency in infants and children <12 years: Treatment".)
●(See "Iron requirements and iron deficiency in adolescents".)
●(See "Causes and diagnosis of iron deficiency and iron deficiency anemia in adults".)
●(See "Treatment of iron deficiency anemia in adults".)
UpToDate also offers patient education materials. "The Basics" topics are short overviews written in plain language, at the 5th to 6th grade reading level, that answer the main questions a patient is likely to have about their condition. "Beyond the Basics" topics are written at the 10th to 12th grade reading level and are intended for readers who are seeking more detail and are comfortable with some medical terminology. You can share this content directly with your patients:
●(See "Patient education: Anemia caused by low iron (The Basics)".)
●(See "Patient education: Anemia caused by low iron in adults (Beyond the Basics)".)
DIAGNOSIS
Visit to the emergency department — My introduction to iron deficiency anemia started in 1989 at the age of 17 years. I awoke one morning with eyes so severely swollen I had trouble seeing. This felt different from allergies/conjunctivitis I had experienced as a child, and I was worried. I felt incredibly weak. My parents had already left for work, so I navigated to the phone to call the pediatrician. Based on the description, he guessed either mononucleosis or iron deficiency anemia was the cause and suggested a visit to the emergency department for further evaluation. My vision was so impaired I had to call my aunt to drive me there.
The details of what happened at the emergency department were a blur, except that blood was taken and iron deficiency anemia was diagnosed. What was memorable was the immense relief that someone was able to listen to me and figure out what was causing my symptoms.
Symptoms had been there all along — In retrospect, this drained feeling had been there for a while. In my early teens, participation in organized sports was especially enervating. Sprinting was not a problem, but long-distance events and lengthy soccer games were exhausting. Coaches and teachers claimed that "some people are born runners and others are not" and advised me to "keep chipping away to build up endurance"; this was painfully unsuccessful.
The struggle to participate in sports was particularly onerous on arrival to high school. Playing competitive sports was dispiriting and a source of constant fatigue.
I do not recall addressing this struggle with the pediatrician, or anyone else for that matter. I have no memory of my pediatrician asking questions that would have elicited a clue about the symptoms I was experiencing. I also do not remember conversations about my poor energy level in the classroom, at home, or on the sports field or discussions about the heavy menstrual periods that likely contributed to (or caused) iron deficiency.
My pediatrician's office was located in the basement of a suburban home, without laboratory facilities. He never requested laboratory testing in the 17 years I was under his care.
Determining the cause — Once iron deficiency was diagnosed in the emergency department, I had several evaluations for intestinal blood loss during high school and in college. These did not reveal any evidence of gastrointestinal bleeding, and the cause of iron deficiency anemia was determined to be heavy periods. The medical notes indicated a diagnosis of "microcytic hypochromic anemia with a likely cause of heavy menses and the inability to transport iron from the gut."
TREATMENT
Experience with oral iron — When iron deficiency was first diagnosed, the pediatrician prescribed ferrous sulfate 325 mg, taken 2 to 3 times per day. This tablet caused my stool to become hard, and a stool softener was added. After being monitored closely for about a year, the anemia resolved, and during my college years the dose was 1 ferrous sulfate tablet daily.
However, iron deficiency anemia returned. This time, it was identified by a dermatologist who was treating me for acne and checking monthly laboratory tests. The dermatologist repeated the same course of iron tablets 2 to 3 times per day, plus stool softeners. After iron deficiency anemia was again corrected, the dermatologist noted that my iron stores remained persistently low despite correction of the anemia.
At this point, approximately seven years after my original diagnosis, I saw a general internist who felt that I had not taken iron therapy long enough to replenish stores and was suspicious as to whether I was actually taking the pills, despite my assertion to the contrary. Once again, the same miserable course of iron therapy was prescribed. Stomach upset and concrete bowel movements became the new normal, a daily reminder of my condition.
For years, iron parameters remained on the cusp of deficient. Thankfully, the oral iron was discontinued; it seemed to me that an oral contraceptive made the difference. Several more years passed until I was given an effective alternative to oral iron (intravenous [IV] iron). (See 'Switch to IV iron' below.)
Heavy periods — Taking birth control pills in my early 20s reduced the heavy periods and helped to decrease blood loss. From my perspective, this was the most helpful treatment. However, even while taking an oral contraceptive, which resulted in much lighter periods, my iron stores were still lacking.
Other than birth control, no solutions were offered on how to combat the heavy periods, nor were there any discussions about seeking guidance from a gynecologist.
Later, after the birth of my children, gynecologic treatment options for heavy menses were presented, but based on my medical history it became evident that options were limited. I was told I could no longer take birth control pills due to a history of superficial phlebitis in an arm vein, the cause of which was never determined. This was vexing. An intrauterine device (IUD) was considered, but that could lead to bleeding for days. And uterine ablation was not a good option because of two cesarean deliveries and a history of adhesions related to the surgical scars.
More recently, I was prescribed a course of tranexamic acid, but the pills made me feel ill and paradoxically seemed to increase the bleeding.
Pregnancies — My first pregnancy was at age 28. Iron deficiency was never raised as an issue, other than the standard advice to take a prenatal vitamin with iron. I was fortunate to have a healthy baby boy by normal vaginal delivery.
My second son was born in 2005, by cesarean delivery; in 2007, I had a daughter, again by cesarean. The second pregnancy was complicated by postpartum hemorrhage resulting in a blood transfusion (2 to 4 units). While transfusion clearly helped to treat the anemia for a period of time, the underlying problem of iron deficiency remained unaddressed. A few years later, anemia recurred.
Switch to IV iron — Options for managing iron deficiency anemia with iron tablets had always been presented as the best option. However, as time passed and my health history became more complicated, two things became clear:
●IV iron infusions made the most sense.
●A hematologist might be better equipped to manage my care, help weigh the risks and benefits of IV iron, and help choose the best IV iron formulation.
My health history includes several bouts of C. difficile colitis after being prescribed clindamycin. This was complicated by the development of an anal fistula that required multiple surgical treatments and resulted in re-infections, and together these caused permanently weakened bowel muscles.
My internist had been quite concerned about the risks of IV iron. It turns out many physicians remember serious allergic reactions to an IV iron product that is no longer used. Because of this, many hematologists who prescribe IV iron give ancillary medications such as a diphenhydramine and a glucocorticoid, which always caused fatigue and irritability. It turned out when all of the ancillary medications were stopped, the iron infusions never caused any side effects.
The hematologist and I planned to test quarterly and treat with iron infusions as necessary. The formulations included one that required multiple visits and others that could be handled in a single visit. My current hematologist is using a convenient formulation that can be completely administered in 15 to 30 minutes. The unnecessary diphenhydramine and glucocorticoid premedication are no longer used, and the therapy is streamlined without any toxicity.
MY PERSPECTIVE — Iron deficiency is incredibly common and underappreciated. I wish more attention was paid to the possibility of iron deficiency in people like me, especially if we have symptoms. I wish more thought was put into the side effects of standard treatments and the possibility of alternative treatments. Overall, my care has been outstanding, but there have been some experiences of unnecessary stress.
One of the stresses is that even 30 years in, I still must deal with iron deficiency on a regular basis. Typically, I feel quite well after treatment, only to eventually decline. The decline can be quick or slow. Eventually, I notice that my memory is no longer sharp. I am keenly aware that my tank is low.
I feel like I have missed out on a lot in life as I just haven't felt well enough to join in. While I don't feel like I have suffered from depression, I do feel isolated in that most people cannot relate to or fathom my point of view.
Interrupted care — For the longest time, my providers were associated with a teaching hospital. Care was not seamless. A typical experience was like this:
●Make an appointment.
●Wait for the appointment.
●Create a care plan.
●Wait for the next steps, which often involved behind-the-scenes health insurance approval.
•If one drug was suggested during the appointment and the health insurance company would only approve a different drug, then there would be a follow-up call or note in the medical record telling me the plan had changed.
•After the provider's office put in the orders, someone from the medical institution would have to call the insurance company for approval, and once approved, and only then, could a new appointment be scheduled. Sometimes weeks would go by before an appointment was available, which was incredibly frustrating. All I have ever wanted is to feel better quickly.
While these frustrations were not caused by my care team, I often wished that the entire team could meet to weigh the options together and streamline the process.
The value of a streamlined process became most noticeable to me once I switched to a hematologist in private practice. The entire process was simplified. Prior to the visit, the new team investigated and obtained approval of the existing treatment plan with flexibility for modifications. There was no longer heartache over scheduling, insurance approval lag-time was non-existent, and my confidence in the provider increased 10-fold.
I have been fortunate to have had a few providers over the years who made it a point to advocate for me. They encouraged second opinions and helped find someone they trusted. Most of the time, information was shared orally during appointments or printed post-clinic summaries were sent. As years went by, access to electronic medical records became available.
Gratitude and regrets — My family has been incredibly supportive and understanding. They are truly the only people who have a sense of the toll that it takes.
I tremendously appreciate when medical teams can help peel back the layers of bureaucracy in medical care. My current doctor encourages me to be my own advocate for care and requests that I "call anytime" to discuss and amend the current plan. After 30 years of dealing with this problem, I have reached the point where I actually look forward to witnessing the organizational efficiency provided by the hematologist and his staff.
I also value the empathy and compassion that are evident on the phone and in person. My hematologist listens to me, shares current treatment practices and guidelines, and provides a space to discuss what's on my mind. Since joining a Patient and Family Advisory Council (PFAC) at my hospital, I have become more vocal about my treatment, and I feel empowered to ask questions. Prior to appointments, I make a list of my top three medical concerns to discuss face-to-face, which I have found to be extremely helpful. Every doctor should ask patients to do that prior to visits.
Nonetheless, navigating these waters has been time-consuming, emotionally draining, and isolating.
●I wish that my pediatrician had asked better questions and looked for guidance from a gynecologist.
●I wish that doctors asked how I was coping.
●I wish my teen/young-adult self had the guts to ask questions.
●I wish I had felt more empowered earlier on in my care.
●I wish that I had known that switching providers would offer a fresh perspective on care and provide hope in solving this decades-old problem.
Finding a provider who can simplify the treatment process is ideal, yet many people do not have the time or resources to do so.
What would have helped — My perspective on my condition has been informed by my PFAC work with the nonprofit Institute for Patient- and Family-Centered Care (IFPCC), which proposes four core concepts in working with (rather than "to" or "for") patients: dignity and respect, information sharing, participation, and collaboration.
●Listening – I wish that physicians found time to truly listen. From my perspective, it should not have required a visit to the emergency department to make the straightforward diagnosis of iron deficiency that had been accumulating over several years, especially when classic symptoms were present.
I also wish my physician had listened to my frustrations with oral iron treatments, rather than suggesting the pills were not being taken. If someone is tolerating oral iron without side effects, it makes sense to continue, but if it is interfering with their functioning on a daily basis, and there is an alternative without these side effects, it makes sense to discuss the option of switching.
●Preparation – If collaboration with other specialties is required, please make the effort to research and understand. Long lapses between diagnosis, creating a care plan, and scheduling can feel like it takes forever. Speed it up. What seems like a reasonable amount of time for the provider is not the same sense of urgency felt by the patient.
Patients should be empowered to write down important questions that need to be addressed in person. It is an absolute necessity to provide patients advice on how to organize medical information and communicate symptoms, feelings, state of mind, and concerns.
Consideration of the appropriate medication and details and frequency of its administration should always take place and, if possible, simplification of the plan makes a huge difference.
●Respect – Physicians should treat patients with dignity and respect. Because most of my care was at a teaching hospital, many people were involved in scrutinizing my history over the years. There was one doctor who always made time to ask about my family members during every appointment. While this wasn't exactly relevant to my diagnosis, it reflected care, conveyed genuine interest, and was a source of comfort.
●Shared decision-making and information – Patients and families should be able to participate in care plan decisions. As an example, a provider reviewed differences between intravenous (IV) iron products and informed me that one of the drugs could be given faster and in a single dose at an off-site facility. I was able to make the choice to go off-site and get the more convenient drug. It was empowering to make the decision to go off-site, and my decision made sense. This simple choice allowed me to protect my valuable time that I would rather spend with my family, friends, and doing the activities I love – in short, my life.
Information sharing is critically important to patient care. Once, when there was a shortage of my medication, without advance notice, I was told that I would have to change to a new drug that had to be given once per week over a three-week period, instead of the previously easier one-time infusion. I had to rearrange my schedule at the last minute. From my perspective, this could have been averted. I discussed this concern with the clinic manager, who was happy to have the perspective and to share my perspective with the team (it turned out I was not the only patient to have experienced frustration with this incident). It is highly rewarding to feel that my voice is appreciated and respected.
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