This interview was part of a student project in July 2013. The interview was conducted via email by Laura Timms Cable of Greenville, South Carolina. She is enrolled in the nursing program at Clemson University and her class was studying blood disorders. The interviewee was Ronnetta Griffin of getyourironup.com.
LC: Laura Timms Cable
RG: Ronnetta Griffin (pictured left)
LC: I am assuming that you were diagnosed with Iron-Deficiency Anemia?When were you first diagnosed?
Hi Laura! Thank you so much for giving me an opportunity to share my story and raise awareness about the dangers of Iron Deficiency Anemia (IDA). Yes, I was diagnosed with anemia when I was a teenager, around the age of 16, shortly after my menstrual cycle began. I remember being told by my physician that my anemia might make me feel tired sometimes and that I wouldn’t be able to donate blood. He prescribed an iron supplement.
Unfortunately, no one ever explained to me the seriousness of this iron disorder. I was never told by a physician nor came across any educational materials alerting me to the dangers of untreated anemia – for example, the very real chance of having a heart attack. I look back now and realize that many of the things that I have struggled with throughout my entire adult life might be attributed to my anemia, including the premature birth of my second child.
Iron deficiency is the most common nutritional deficiency and the leading cause of anemia in the world.It is estimated that at least two billion people worldwide are affected and at least3.5 million Americans are anemic, but the actual number of people suffering from anemia is probably far greater. Unfortunately, anemia is often overlooked.
There are TWO very important things to remember about IDA. The first is that it really is a symptom, not a diagnosis. You have to find the root of the problem. The second thing to remember – the most crucial – is that you have to have the proper TESTS to determine IDA. Early detection is so very important. Anemia can be diagnosed by a simple blood test, but unfortunately, many physicians do not routinely test for iron and insurance companies may not cover the costs of testing.
The tests used most often to detect iron deficiency include hemoglobin (the iron-containing protein in the blood that carries iron and oxygen to cells), hematocrit (provides the percentage measures of of red blood cells in the blood), serum ferritin (indicates the amount of iron stored in the body), and serum iron and iron-binding capacity (IBC, UIBC or TIBC). The latter measures are used to calculate transferrin-iron saturation percentage (TS%), a measure of iron in transit in the serum.
Serum ferritin is a very important test because it helps distinguish between iron deficiency anemia and anemia of chronic disease (also called anemia of inflammatory response). In cases of iron deficiency anemia, iron supplements can be helpful; but in cases of anemia of chronic disease, iron supplements could be harmful, even fatal. Other tests might include a complete blood count, zinc protoporphyrin, free erythrocyte protoporphyrin or reticulocyte hemoglobin content (CHr).
A diagnosis of iron deficiency can be made when a person has BOTH low hemoglobin and hematocrit AND a low serum ferritin. Serum iron and transferrin-iron saturation percentage will also be low in a person who is iron deficient. Iron deficiency without anemia (which is my current condition) can occur when a person has a normal hemoglobin, but below normal serum ferritin and/or transferrin saturation. Iron deficiency with anemia can occur when a person has low values of both serum ferritin and hemoglobin.
LC: What were your symptoms?
There is a fairly long list of possible symptoms of IDA (see below)…and I had all but one when I was at my “lowest.”My most predominant symptoms were very severe fatigue, no energy at all, racing and irregular heartbeat, shortness of breath, foggy thinking/ poor memory, joint pain and Pica.
· Dizziness / lightheadedness
· Tachycardia (rapid heartbeat)
· Chest pain
· Irregular heartbeat or heart palpitations
· Pounding or "whooshing" in your ears
· Shortness of Breath aftersimple tasks such as climbing stairs, walking short distances, doing housework
· Sensitivity to cold (low body temperature, unable to get and stay warm)
· Cold hands and feet
· Pica (persistent pattern of eating non-food items including ice, glue, paint, sand, clay, starch, etc.)
· Restless Legs Syndrome (RLS) (legs tingling, twitching, moving uncontrollably,especially when you go to bed)
· Pallor or paleskin (oxygen-rich blood is scarce and is being diverted away from skinto major organs)
· Pale areasinside of the eyelids, mouth and cheeks
· Pale and/or sore tongue
· Blue sclera (white part of eyes can take on a bluish tint, similar to the look of skim milk)
· Skin color can be a gray-green or pale yellow
· Brittle nails,"spoon" nails (concave and raised on the edges), or nails with ridges or depressed areas
· Hair Loss
LC: Do you think you were struggling with this for a while before being diagnosed?
Oh definitely, I unknowingly struggled with it all my life. In fact, I had all of the symptoms that I described above for at least four years before I ever connected them. I constantly blamed my symptoms on getting older, being out of shape, being a busy mom and just about anything else that comes to mind.
For me, the thing that finally clicked was reading about Pica, which is characterized by eating non-food items such as dirt, paper, clay, sand, hair, coins…and ice. I stumbled onto this information because my husband had asked -- no begged -- me to stop crunching ice. It was an annoying habit that I had adopted almost fulltime. I had become practically obsessed with eating ice. I kept an iced beverage in my hand at all times, I always purchased an extra cup of ice at the drive-thru to save for later and even had crazy discussions with several of my female friends about which fast food restaurants had the best ice! As embarrassing as this is to share, I think it’s so important in case you may recognize yourself or one of your patients in this story. As I surfed the Web I discovered that what I had thought was just a really bad habit was actually a sign of an iron disorder! When I finally read that “eating” ice could be a sign of severe Iron Deficiency Anemia (IDA), I went on to learn about the other telltale symptoms. I was experiencing almost all of them.
LC: What course of action were you prescribed by your physician? Do you see a specialist?
A few years ago, shortly after the Pica discovery, my gynecologist did some routine blood work and discovered that my hemoglobin was at a shockingly low level of 6 (normal range is 12-14). She wanted to immediately admit me to the hospital, but I begged her to refer me to a hematologist instead. I was so sick, but all I could think about was how my family couldn’t do without me for a few days. Little did I know how close they had come to being without me permanently. The hematologist explained that I could have experienced heart failure at any point with such a low hemoglobin.
This was my first IDA “diagnosis” as an adult. The hematologist ordered IV iron infusions which I received over the course of four days in an out-patient infusion lab. Looking back, I think I believed at the time that the IV iron was the end-all solution to my anemia. I still did not fully understand my condition and the need for follow up treatment, a change in my diet and lifestyle and the serious need to monitor my IDA very closely.
Once I was feeling great again – actually better than I had felt in many, many years, I fell into the “IDA Cycle” that most IDA sufferers do. I tried to start taking oral iron supplements and the side effects (constipation, extreme stomach pain, diarrhea) were so unpleasant that I all but stopped taking them and basically went into denial. You will find this to be the case with many patients. I can’t tell you how many women I’ve talked with who share this same story. Also, when I did take the supplements, I was taking them in the wrong way. I was a big tea and coffee drinker and the tannin contained in both were blocking my iron absorption. Bioavailability is a huge factor in iron absorption that is not well known.
LC: I know that some people are diagnosed with anemia – take some iron – and then they are fine.
In a very few cases, anemia can be a temporary condition, but it is typically a chronic one. The possible causes are listed below:
(1) Increased Demand for Iron
The increased demand for iron can occur with certain conditions including:
· blood loss from heavy menstruation
· frequent or excessive blood donation
· digestive tract disease (including infections)
Iron deficiency can also be caused by:
· certain medications
· some dietary supplements or substances that cause bleeding such as pain relievers with aspirin
· a result of poisoning from lead, toxic chemicals or alcohol abuse
(2) Decreased Intake or Absorption of Iron
Decreased intake or absorption can occur in diets that do not include heme iron, the iron found in meat and shellfish. Heme iron is absorbed more efficiently than non-heme iron found in plants and dietary supplements.
LC: Will this be something you will have to monitor closely your entire life? What do you do on a daily basis to keep your iron levels up?
Chronic anemia is a constant struggle and pretty much a roller coaster ride. Close monitoring of IDA is very important. Interestingly enough, I had routine blood work done about two weeks ago. The physician said that my hemoglobin was normal and sent me on my way. Because I am again experiencing some symptoms of iron deficiency such as hair loss and a sore tongue, I decided to order a full iron panel through healtheiron.com and had the blood drawn at a local lab. When I received my results by email, my hemoglobin was 12.8 (still within the lab’s normal range of 11.1-15) but I was flagged for deficiency in all iron levels and one was even flagged with an “alert” message. My iron serum was 26 (normal 35-155), Iron Saturation was 7 (normal 15-55) and Serum Ferritin was 6 (normal 15-150). Clearly I am iron deficient but have not yet returned to the anemia diagnosis. Ignoring this current situation due to my “normal hemoglobin” could be extremely dangerous.
In the last few years I have had three separate rounds of IV iron infusion therapy (the most recent round was billed at over $8000 and after insurance, the cost to us was over $1000) and I am finally realizing that my iron simply does not “hold” for more than 4-6 months. There could be other factors – I could possibly have some malabsorption issues or a genetic bleeding disorder – but the bottom line for me is that my periods are just too heavy. Even with the iron infusions, I can’t keep up with the amount of iron I am losing each month. In my case, I will probably be opting for a surgical procedure such as endometrial ablation in the very near future to hopefully stop my periods or minimize them.
As I mentioned before, iron supplementation is tricky. I am still looking for a great iron supplement that has good absorption but is easy on the stomach. Honestly, the best way I have found to increase my iron levels is by eating lean, red meats. I try to eat steak as often as possible since it contains heme iron that is easily absorbed. I also limit my intake of tea, coffee and dairy when I am eating an iron-rich meal so that I don’t block the iron I am receiving. With so many people limiting their intake of red meat and eating very limited diets, I worry about the increase of anemia in the future.
LC: Do any family members have this disorder/genetic link?
I have several aunts who have struggled with anemia.
LC: You are the Director of Public Relations & Community Programs for the Iron Disorders Institute.Can you tell me a little about this organization and your role?
Iron Disorders Institute (IDI) is a 501(c)3 national organization headquartered in Greenville, South Carolina with an International reach. IDI received its non-profit status in 1998 and is the national advocacy partner with the US Centers for Disease Control and Prevention, Atlanta for public education and awareness of hereditary hemochromatosis, a condition of too much iron in the body. Because an estimated 90 million people in America have an iron disorder, IDI exists so that people with iron disorders receive a complete diagnosis, appropriate therapy and are equipped with the knowledge to live healthier lives. IDI’s vision is that no one should suffer or die prematurely because of Iron-Out-of-Balance™ (IOB).
A little over a year ago, I was very lucky to be introduced by a mutual friend to Cheryl Garrison, the Executive Director and Co-Founder of the Iron Disorders Institute. She not only helped me personally with my own IDA and pursuit of treatment and management, but she also helped me channel my desire to help others who share my difficult struggle with IDA. Because of her encouragement I founded Get Your Iron Up and launched an educational website (getyourironup.com) with the support and endorsement of the Iron Disorders Institute.
Since my very first meeting with Cheryl, I have been an active volunteer for IDI and took on the role of Director of Public Relations & Community Programs. I am very excited that we have recently partnered with St. Francis Bon Secours to raise awareness and educate the public about the dangers of IDA. Together, we plan to offer free iron screenings and educational events in the Upstate. In the midlands area, we recently partnered with Lexington Medical Center and presented a free iron screening to the contestants competing in the 2013 Miss South Carolina and Miss South Carolina Teen pageants. We found that over 30% of those tested were anemic! Luckily we were able to identify and educate those young women at an early age – around the same time that I was first diagnosed as a teenager – and equip them with the information they need to stay healthy. It was very rewarding to be able to do for them what I wish someone had been able to do for me and hopefully prevent them from a lifetime of medical issues and anguish.
LC: You are also the founder of getyourironup.com.When did you found this site and what information can we as nursing students/future nurses gain from the site. Will our patients benefit from this site?
The need is great for more information about IDA and I am so happy to have found the vehicle for getting that message out there! The development of getyourironup.com is something that I am extremely proud of. I wanted to create a dynamic website that I would have found helpful and benefitted from by reading when I was so lost and confused. I knew the questions I was asking in my own research and I knew how difficult it was to find those answers. At getyourironup.com we provide accurate and reliable information about Iron Deficiency Anemia (IDA) that is backed by a panel of world-renowned experts in the fields of medicine and science -- the Medical and Scientific Advisory Board of the Iron Disorders Institute.
We have takenthe available research andinformation and presented it in patient-friendly terms, with the emphasis that itdeserves, because we understand how valuable your patients’ time is and how important it is for them to fully grasp the dangers of IDA. Two of the unique features that I felt strongly about including are video blogs and patient testimonies. When I was so exhausted and literally suffering with my symptoms, I wished I had a friend to explain IDA and break it down for me in terms I could understand. That is what I have tried to do with the site.
Much of the inspiration for getyourironup.com came from the wonderful nurses I encountered throughout my diagnosis and treatment for IDA. From the nurses who have taken care of me in the infusion lab to those I have gotten to know in the hematologist’s office, I found that they were all hungry for resources and educational materials that they could share with their patients. One gave me tips to have a comfortable iron infusion. Some had suggestions about good iron supplements. Others had made copies of dietary and nutritional suggestions so that they could hand them out to patients. They all agreed that a comprehensive website would be a wonderful resource and tool to share with the anemia patients that they care for. Nurses are often the first and sometimes the only point of contact for many patients and it’s imperative that they understand the full spectrum of iron disorders and the very important role they play in diagnosis and treatment.
With over 45,000 unique visitors and 750,000 page views each month at our linked sister site – irondisorders.org – our viewership is growly daily since our launch at the end of 2012. I am constantly humbled and thrilled by the kind comments posted and the emails I receive thanking me for sharing my story and posting videos about my experience. I believe that we are definitely accomplishing what I originally set out to do. By sharing my own experience, I hope to make a real difference in the lives of others and I hope that getyourironup.com will continue to be a valuable resource for both patients and health care providers for many years to come.
Thanks again for this opportunity and I welcome your suggestions and input!