iron queens & their stories

I extend my heartfelt thanks to these brave, bold and beautiful women for sharing their personal stories and struggles
with Iron Deficiency and Iron Deficiency Anemia. You're ALL Iron Queens for striving to overcome this disorder!

If you would like to share your story, please click here.


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RONNETTA / SOUTH CAROLINA

I will begin with my story, which I first shared in 2012 with the hope that it might help someone else. 

If you have found your way to this site because you suspect that the symptoms you are experiencing may be due to iron deficiency with or without anemia, then please know that you are not alone. I've been in your shoes several times before, searching the web, trying to piece together my problems -- extreme fatigue, racing heart, shortness of breath, feeling cold all of the time, repeated illnesses – and trying to make sense of it all. Was I sick? Was I out of shape? Was I just getting older? I had no idea that anemia…a diagnosis I had basically ignored my entire life…could be making me feel this way.

Like many of you, I was diagnosed with anemia when I was a teenager, but 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 suffered with throughout my adult life – fatigue, foggy thinking, poor memory, joint pain, headaches – can be attributed to my anemia.

However, when I was researching my symptoms in 2011, I never bothered to read about anemia. My understanding of anemia was limited to the idea that it might cause fatigue and prevented me from donating blood. 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 full time. 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! I had the constant urge to "eat" ice despite the fact that I was always freezing and couldn't get warm. As embarrassing as this is to share, I think it’s so important in case you may recognize yourself in this story. 

Along with the ice, I was consuming large amounts of iced tea. I was definitely hooked on caffeine and in retrospect, I now know that it was the only thing that was enabling me to get going in the morning and keep moving throughout the day. However, the tea was one of the main culprits in my iron deficiency anemia. I eventually learned that the tannin in tea blocks the body’s ability to absorb iron. So any iron that I may have been ingesting through my diet (which was admittedly poor) was being blocked by the iron bullies – tannin in tea and coffee (and red wine), dairy products, calcium supplements and some fiber. I had never heard about this so I was completely unaware. 

I wondered if caffeine was the culprit so I decided to kick the habit. After about two weeks, when I was fully "decaffeinated," it was like I ran full speed into a brick wall. I totally crashed. I could no longer function. Caffeine had been the only thing keeping me going. After spending four straight days on the sofa, nearly lifeless, lacking the energy to even brush my hair or care for my two boys, my husband took action. He literally picked me up and carried me to the after-hours medical clinic. A finger stick blood test revealed that my hemoglobin was 6...less than half the minimum normal range of 12-16. My blood cells, which should be plump and full of oxygen, were shriveled like deflated life preservers. 

I searched the Internet and found my way to www.IronDisorders.org. The website of Iron Disorders Institute (IDI) provided the answers that motivated me to get help fast. The next day, I called for an urgent appointment with a hematologist (blood specialist) and he did further testing to check my serum ferritin (iron) and other crucial markers. (Low hemoglobin alone is an indicator of a problem, but let me caution you that you MUST also know your ferritin level before you start any type of iron supplementation. Certain conditions and infections can cause your hemoglobin to drop, but your iron stores could in fact still be very high. Taking iron when you already have iron overload can be extremely dangerous and even fatal.) 

My ferritin was only 2 (normal 50-100)! My hematologist ordered a series of IV Iron Infusions at an infusion lab at a local cancer center. Once there, I looked around and gave thanks that I was not there for chemotherapy and felt embarrassed that I had allowed this to happen. (Note, we shouldn't let ourselves feel that way!) I vowed to try to educate and inform my family, friends and anyone who would listen about the dangers of IDA. I decided to make it my priority and mission to find new ways to improve my diet and lifestyle to avoid another scare in the future, and hopefully help other women along the way. I just wasn’t sure how to go about doing that.I started researching and talking about anemia with anyone who would listen, and I was shocked to learn that I wasn't the only woman in the dark about this deadly disorder.

That was when I made the stunning discovery that Iron Disorders Institute is headquartered in the same city where I live, Greenville, South Carolina! Stranger still, the Executive Director Cheryl Garrison and I share a mutual friend who suggested that I contact Cheryl for iron information. Our first meeting for morning coffee turned into lunch...and a six-hour discussion. I was amazed at the information she shared with me and realized how very NOT alone I was! The statistics about IDA are staggering – and I immediately felt a calling to help her spread awareness about the untold dangers of the disorder. Cheryl and I continued to meet on a regular basis and plans started to formulate. Eventually, we realized that we needed a “sister site” for IronDisorders.org, something that was tailored specifically to the unique needs of those individuals living with IDA. That’s when GETYOURIRONUP.org began to take shape.

As a daughter, wife and mother of two busy boys, I know how Iron Deficiency Anemia can slowly creep up on you, before you even realize what's happening. As a former Miss South Carolina and Mrs. South Carolina, I realize the power of having a public platform and sharing my story to help raise awareness. I’m honored to help advance IDI’s vision that “No one should suffer or die prematurely because of Iron-Out-of-Balance™. I'm not a doctor, but I am a certified iron educator and I do know just how awful iron deficiency can make you feel. I also know how excited I am to have this opportunity to help others in this journey. So please remember that you are not alone.

I hope that you will find what you’re looking for on my site. If you have something to add or share...contact me! Thanks for visiting, stay healthy and GET YOUR IRON UP!

NOTE: This story is also available on the blog/vlog page if you would like to add a comment.


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Cherita / Georgia

My story starts about 6 months ago when I was very short of breath and went to the emergency room. There were two causes: One was blood clots in my lungs, and two was iron deficient anemia. My hemoglobin was only at 7 and my other iron levels were all dangerously low. They gave me a blood transfusion as well as an iron infusion while in the hospital. At my 6 month check, my iron levels are back down, not as low, but low enough. I am scheduled to due an iron infusion in the morning. I know that I had been incessantly chewing ice for the last several years, but didn't know this was why! I believe this all started, not only from having a family history of low iron, but also from having gastric sleeve surgery a few years ago. It is great to find this site, where you can read about people that are going through the same thing I am. Much love!

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Valerie n / california

Yesterday, I was getting my second round of Iron Infusions when I googled and came across with your video. Wonderful to have found you and not feel like I'm the only one. My ferritin level was at 4. My first infusion was fine but I had a lot of side effects, itchy body, dizziness and nausea, not to mention my whole chin broke out in huge nasty pimples. :-(
I have felt so much better and the second infusion, so far so good!! Thank God! 

I have read about some food can block the absorption of iron, have you read anything about it? I found a website called irondisorders.org.

REPLY: Why yes Valerie, I certainly am familiar with that website. :-)  Glad you found it.

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valerie H / California

 I was terrified and thought I was dying. The symptoms gradually over time appeared to sneak up on me, but looking back I was realizing the changes but didn't know what was wrong? My dr said I was mildly anemic 8 months prior but untreated mildly anemic turned into very anemic. I couldn't get off my couch, I had to take a leave from work, my muscles are very weak, my heart has an irregular beat most of the time, and I have extreme anxiety. After several tests the anemia appears to be linked to my period. I am about to begin iron infusions at a cancer center this Monday. I wish I would have known how serious this was, and I feel foolish for ignoring what my body was trying to tell me. My body was sending a message for several months and I ignored them, then my body just gave up. I can't wait to start feeling like my old self. This has been a very scary experience, but it taught me not to ignore any sign. Thanks for your site, it gave me some comfort.


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Dana / texas

My journey began in 2011. My son second boy was only 1 year old and I thought I was going crazy, heart racing - full on panic mode in Target. I called my husband and said my heart was racing and I thought I was going to pass out in the store with the baby in the cart. After a few minutes I was okay and finished shopping and went home. This happened a few more times and finally drove myself in a panic to the Dr. The Dr. said it was panic attacks and prescribed me medicine to control them. I did not fill it as I knew something else was going on. 2 years later I finally found a Dr. that did blood work and found that my Iron level was really low. She prescribed iron and things got better. I should mention that I have Extremely heavy cycles lasting only 3 days. Fast forward to 2017. I have been on iron and vitamin D supplements. I was in Academy with my husband when my heart decided to go off to the races. I had to sit down, breath. After a minute I was good to go again. Then a week later I started to feel this "flutter" in my neck that would take my breath away. I made a Dr. appointment - Thyroid was swollen..I went in for a Thyroid scan this week...no results yet. Blood work came back and my hemoglobin level is 8. I am scheduled next week at the Heart hospital for a 24 hour monitor and an appointment with my OB/Gyn for further testing. Not sure what the outcome will be. Praying for the best. So glad I found this site.

rachel / texas

I don't have a doctor. I haven't had health insurance for over 6 years. Last night I thought I would die, no joke. From fatigue, exhaustion, and just not knowing what the heck was wrong with me. I have a story that is all over the map! Then my last effort clicking on your page! And bam! IDA. Thank you. I'm an avid ice eater. But hate the cold. I sleep with a camping heater & I have one in my bathroom too. For two years I feel like I'm falling asleep at work. I want to buy the Anemocheck unit for self test anemia. I'm also going to order the blood test and iron test from home . I do eat beets, nuts and beans. But love dairy . I'm going to make some changes. You were my last CLICK! Or I felt I would give up searching what was wrong with me. Thank you. I have more to my story I could share.

NOTE: Rachel and all other Iron Queens, be advised that any test that uses a finger stick can only tell you what your hemoglobin (Hgb) is. This will determine if you are anemic, but it cannot tell if you are iron deficient. Many times I have had full-blown symptoms, suffering greatly, only to be told that my Hgb was normal and I was "fine." Only an iron panel (which requires a blood draw from a vein) revealed the seriousness of my situation. In those cases, I was suffering from iron deficiency WITHOUT anemia and required immediate treatment. Had I stopped at the finger stick, I would never have gotten the answers I needed and would have continued to suffer...which has been the case for me many times throughout my life. Don't let it happen to you -- insist on a full iron panel. If your doctor will not order one, click here to learn more about ordering your own.

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salida / texas

My story has just began. I was not only diagnosed with Lupus, but Iron Defincency/Anemia just last week. Tomorrow I start a series of iron infusions. I am so happy that I stumbled upon this forum. It is truly helpful and has put me at ease.


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GRETCHEN / VIRGINIA

My IDA started in high school
then started again in college. I remember being utterly exhausted, unable to think clearly, grades dropped, cranky, irritable, memory problems, never feeling like I had a refreshed sleep, reoccurring sinus infections, bladder infections,funny tremors just a whole slue of out of focus problems. The scariest part was the pounding heart, plus I would take 5 showers a day to keep warm. I could exercise well, plenty of exercise however, my heart would continue to race after my workout that cued me in to my deficiency.

Glad I caught on to my problem before it escalated because I know now do not ignore an iron deficiency and of course get in to see the doc. Hope this helps.

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KERI / alabama

I have recently been diagnosed with anemia due to blood loss. No one believed I was as sick as I was claiming. They thought I was lazy or depressed. That sent me even further into my illness. I felt if no one cares, why should I?

You are not alone! Don't let the naysayers bring you down. Listen to your body, not theirs. You know it better than anyone. I am now recovering and trying to eat right. Been craving anything cooked on an iron skillet. Just know that when you are sick, if they can't believe you, they can't help you. You deserve better. Love yourself, you ARE worth it!

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leslie / virginia

A couple of months ago I began having severe fatigue and dizziness/ lightheadedness. I even began feeling like I had RLS on top.

After a few weeks I saw a doctor and I have low ferritin. I'm now taking elemental iron, Vitron-C. It's been two weeks but I still have noticeable dizziness and when I try to focus or think too intensely my mind spins or so it seems. This has been going on the whole time and I'm curious if that's common? I have a follow up in 4 weeks but it's affecting my performance and work and I would like to figure this out, especially if it's unrelated.


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tammy / oklahoma

All my life I've been anemic, as a child I can remember drinking green stuff the doctor prescribed to increase my iron level. The crazy thing is that as I got older, I don't recall ever having a doctor care what my current iron level was. Until 8 weeks ago, at that point I just couldn't deal with the constant fatigue, headaches, heart palpitations, exhaustion, lightheadedness, always being cold, shortness of breath, joint pain, walking crooked, etc. 

For what ever reason I didn't put low iron together with the constant symptoms nor did I correlate the eating of ice! I can't begin to tell you how much ice I have consumed in the past few years! 
I finally made an appointment at a women's clinic, (thinking my hormones were out of whack). The doctor ordered 25 different blood tests and 3 weeks later told me I had serious low Iron (IDA) as well as serious B12 deficiency (Pernicious Anemia) which is an Auto Immune Disorder (I tested positive for some type of Auto Immune). Four weeks ago I started B12 injections and Iron Infusions (in a shot form) still waiting to feel better but thanks to your website, I have high hopes!! 

Thanks for sharing your story, it's encouraging to hear improvements in other's health!

JEN

I am a mom of 3 kids....two adult (mid 20's) and a teenage son with severe autism....he doesn't sleep at night, no matter what we give him to help...so, naturally I blamed my fatigue, fogginess, forgetfulness, and irritability on that!! I went for a well visit to check my thyroid levels...the endocrinologist decided to do a CBC...well, I got a call at 8 am the next day, telling me to get to my primary doctor ASAP....that my hemoglobin was 7.

It made sense after that...so I got sent to a hematologist right away, and had Injectafer by IV...I didn't feel better until about 3 days later...in fact, I felt worse...but once the 3 days passed, I felt less short of breath and less fatigued (even with frequent waking with my son).  I went for the second round the following week, and after that, I felt like a million....but, a few short months later, my hemoglobin dropped again to the same level...so I am back at square one (iron supplements weren't helping).

I was advised to get a hysterectomy. I'm considering it, but scared of recovery time, and caring for my son.

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kim / west virginia

My name is Kim and I am 33 years old and a single mother of 4 children. I was first told I was anemic after I had my first born almost 13 years ago. Not knowing what that really meant, I took the iron pills that were given to me and realized they made my stomach cramp and constipated and decided I didn't need to take them anymore. I felt fine. So from 2003 to 2013, I had 3 more children, making that 4 C-sections I had. After each birth, I was told the same thing, anemic, anemic, anemic....take these iron pills....and the same patter continued....and I took them for as long as I could but then never stuck with them. After having my 4th and final child, they wanted to actually give me blood but I refused and agreed to take the pills...and I did...for a while. I went back in 2015 for a regular checkup and realized that I was low in a lot of things. My hemoglobin was low, iron, B-12, Vitamin D so my doctor started me on a regimen of stuff including iron capsules. These were extended release to hopefully help with the cramps and constipation....well as you can guess, I stopped taking them because of the side affects. All of this leads me to about 1 month ago in June 2016 again I went for a regular checkup with my doctor and again my iron and hemoglobin were low. This time knowing that I am not an iron pill taker, she referred me to a hematologist. I had my first appointment last Wednesday and he suggested I do the Iron Infusion. Of course, I have done every single bit of research on this and just like many are, I am worried about how I am going to feel. What are going to be the side affects? Will I be constipated and have cramps like the pills? Will I swell up? Gain weight? I just finished watching Ronnetta's Girlfriends Guide to Iron Infusions and I am SOOOO thankful for that video. I know everyone is different and I don't expect to not have any symptoms but seeing another woman have the same thing and get her perspective rather than reading about it on a medical website makes me at ease. So on July 28, 2016 I will go for my first Iron Infusion. Hoping that all goes well! Wish me luck!


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elizabeth / alabama

I first found out about my anemia when I wanted to donate blood. I quickly found out that because of my iron levels I couldn't donate. Then shortly after that day I became too weak to get out of bed. Slept all day all night. No energy, missed work. My restless leg syndrome was out of control. Headaches turned into migraines. And sonic ice is the best. I would eat a box of BC powders a week. I finally pulled my * together and drove myself to the doctor. I spent $300 on blood tests and lab work just to be told I had anemia and was given a prescription of iron pills. Then I end up with constipation and stop taking them. I buy ensure and drink it but it's not enough. This has happened numerous...countless more times. But I never really knew much about my condition. Doctors never sat me down and explained it. I have done lots of research on the Web. Goggle has always been my go-to guide for help. But this site helped me a lot. If you have anemia check out this site.

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julie / maine

I have had chronic fatigue syndrome for over thirty years, actually probably all my life as I look back, but severe for thirty. It just got progressively worse. Worse than that was repeatedly going to doctors and being told there's nothing wrong with me. I go to bed feeling horrible and know I'm gonna wake up with it in AM....always! My mother has what I have, she had to retire after getting her degree in her forties! As the years went by it just got progressively worse. So far it has destroyed my lifelong dreams! With no end in sight. When ur dad takes you to Aruba and u can't get out of bed, when you're inline in a store and you have to sit on the floor waiting to pay, and i got up and went to work everyday holding myself up, till finally one day I couldn't stand at work, so like Ronetta, my friend came to get me and carried me to the emergency room. Unlike her my bloodwork said I'm fine. That was February 1995 and I'm still batting it. My symptoms are classic: horrendous exhaustion, extreme shortness of breath, always cold, I have the heat on in summer, etc, etc. So two years ago I joined a weight loss clinic and they did blood work and called me in a room to say your thyroid is slightly low and cholesterol high. I was thrilled....I finally had an answer. I go to a specialist, endocrinologist, he is hesitant to give me any thyroid pills, says I'm borderline which is almost normal, and I said I don't care how close to normal u think I am, I feel like I'm dying, so he tests me for hashimotos and sure enough I have the antibodies, so he puts me on low level thyroxin. Well,it does absolutely nothing ZERO for me. So I studied more and learned that thyroid and iron problems can go together, and I remembered being refused to donate blood because I'm anemic at the Red Cross. So why is it that the Red Cross can determine my low iron and MDs cannot? Even as recently as a month ago I went in and requested everything to check iron, I was crying, saying thirty years of my dreams down the drain due to this. My favorite saying is "all I wanna do is lie down" you learn not to talk about it, you don't look sick, because Drs can't find anything. People think you're a hypochondriac, so u act happy all the time, this is including people in my own family who don't get it. So sure enough the Drs office calls me back. I said let me guess, my CBC is normal? Yup. I said did u test like I asked with tear stained eyes ALL things related to iron, including transferrin and ferritin? Nope. And I did this in order to talk to a hemotologist, but you can't see hemotologist UNTIL blood tests show a problem. Mine didn't, but I've read a lot about ferritin and how it is missed and a lot of people go undiagnosed for years, like me. My heart feels tight, like it's being pulled on because it has to make up for the shortness of breath! Plus I have the heart palpitations! So i have an appt this month to request once again ferritin, I think I need iron transfusions but I'll probably never get them and I'm convinced I have maybe not anemia, but low iron, but I terrified of blood work saying I'm in normal range and being dismissed. Recently I gave up all sugar and gluten and it helped, then I ate iron rich foods, felt better, actually, took vitamins too but I gag on them, so I dread them. Took a week off if the iron foods and I'm extremely sick again,that tells me it's iron related. And I stopped the thyroid pill and seeing the old geezer dr who is old school, narrow minded. I would like to be on natural thyroid instead. I've had better luck with a naturopath any day, but they don't take insurance. I'm on disability and I'm a landlord, I spend most of my time in bed wearing out expensive sheets I can't even walk my dog. The medical community has failed me! All I want is my dreams! I'm afraid to get my ferritin tested, I'm certain they will say I'm normal, but I don't understand how I can feel at death's door and have it not show up somewhere. I'm convinced this is more than thyroid!! Help...has anyone had this scenario? I am an outgoing person, my family too. Sick and tied of feeling sick and tired. The naturopath thinks it's adrenals, maybe but I'm convinced maybe I don't absorb iron well or something ! Help!

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betty / washington

Hello everyone I have been battling Anemia since 2003. My lowest Anemia number has been 4. I was exhausted at times. Driving and wanting to fall asleep at the stop light was the worst, struggling to stay awake in meetings. I can't seem to get pass my ferritin level of 10 and this is now year 2015. I take an iron supplement every other day due to the pipes getting clogged (sorry TMI). I also take a stool softener, it helps at time. I told my doctor that an Iron infusion is my last option. You see I have Rheumatoid Arthritis and I already sit in the IV therapy 4 times a year for 4 hours. But if it will make me feel better and have more energy then I will do it.

Thank you for your website to know that I am not alone.


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debbie / colorado

I found out I was anemic in July of this year, It's November and I still feel like my body is not adapting to the regimen my Dr suggested. So, I am on an iron supplement and vitamin D, almost done with those, when that did not appear to be working she inquired further and we determined (after many years of my complaints) that it was due to my heavy menstrual cycles, she prescribed birth control for me. Now I get crazy migraines and as of today November 25, 2015 I have been having breakthrough bleeding (while on the pill) for 21 days.... straight... the birth control I am on now I must take daily for 84 days without skipping and this will eliminate my cycle and build up my blood levels...hopefully. I feel ignored and that my symptoms aren't taken seriously. Oh, she found out I was anemic because I told her I'd had a really bad headache one day while out with my family and blacked out. I had no recollection of the event and had a mild seizure later that night! Four months later and I have been doing my own research to combat the symptoms, the hormones in the birth control make me sweat (not sure if that's part of anemia) but I toss and turn, sleeping 4-6 hrs at night...if that. I am glad I found this site...I will be taking my health into my own hands from here on out.

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yola / missouri

I had problem anemia because every time I really very weak, low and my arm is tired and hurt too because I been suffer long time like 5 or 6 years. Also I am frustrated been work 23 years service of post office that reason I don't know what I do this my job situation also I am deaf and I am not happy, concern about my health very important and I can't ignored this. My job seems push me too much and I have talk with new doctor soon this Friday about my history health. Will u help me and advice me and I will listen ur words. I will pray for god of Jesus to me...ASAP. Thank you.

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sasha / alabama

I was recently sent by my endocrinologist to the Cancer Center in my town due to low iron levels. I was in the single digits and when the doctor described some of the possible side effects from having an iron level this low, I started crying because finally someone was recognizing that it wasn't just me being run down (single mom) or lazy! The energy level that I don't have is overwhelming. I sit at work barely able to move and on the weekends I am so depressed because of how tired I am. I have two very active little girls and it's just beyond devastating to me. I am in my 4th week of IV Iron Infusions but I can't say if I feel any better. I get headaches pretty frequently and like I said, the overwhelming tiredness is almost too much to handle. I'm praying that the 8 more weeks I have of the IV Infusions I will eventually start to feel normal again.


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Elize / north carolina

Hi, I'm in my third week after two iron transfusions. I know it's not a fast process. It takes even up to ninety days to absorb into your system. I still have all the symptoms. Can't move or drive, whole thing. Is there anything further I can do to help this process speed way up. I have had a horrible time as well as all of you. I've been in bed for years not knowing. Going to the doctor monthly and then several until I dropped then went to the ER. He read blood results from years on my file in the computer from many doctors and told me the number was a 2. I started to finally get medical help then. I only know what I've read here. How long did it take you to recover even go for a walk? I still can't breathe to even do that. Worse the brain fog, anxiety, and dead fatigue. It's getting to be very depressing. Hopeless. What will I start to notice aprox. when. Will it show I'm getting better. The first things you get back. How did you recover taking care of two young kids. I have felt hopeless ,quilt and embarrassment. My family thinks it's nothing. They can't see it. They put horrible guilt on me. All sick of me being sick so I've come this far only this far alone. Even taking my life if this is it over time. Help. If I can get better. I want to help with this site and you. I've not felt well my whole life as I didn't educate myself about having anemia. I had no idea it could cause this. Years of my life gone. But I can be positive about it also.

NOTE: To Elize, and anyone who is feeling this depressed and despondent, you HAVE to get help immediately. Don't take "no" for an answer. You do not have to feel this way and I promise that if it's iron deficiency causing your symptoms (and YES, it CAN make you feel this way!), you can get better. God bless and please take care of yourself.

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devette / michigan

About 7 months ago, I began feeling as if I had one foot in the grave. I was running a park for the county and caring for my two young children. I would sob to my husband explaining how I felt stretched too thin. My mind couldn't function, I had horrific headaches....I even ran a red light while driving! Something was wrong. I believed I was starting perimenopause at 34. I went to the doctor. She did some blood work and called two days later. "You need to come back in for more blood work." Huh? After the second results, she sent me to a hematologist. 

After CT scans and a bone marrow biopsy, they still didn't have a clue as to what was causing my blood work to be so crazy. But knew I needed iron quick. My ferritin was a 4 and my biopsy showed absolutely NO iron in my marrow! Not good!

I am heading up tomorrow for my second iron infusion. I am also receiving Venofer. They are giving me the iron on three Wednesdays in a row. Then they'll see where my levels are. I had a pleasant experience with the first infusion. Not too bad. But later in the day my legs felt like I had rocks in them and they swelled up. I called the clinic and they said to take Benadryl right away....I was having a reaction. The swelling went down while I slept. The next morning I woke up to feeling as if someone ran me over.....literally!!! But the third day I was fine. So for me, the second day is the roughest! I just sleep all day. I'll try and update you on how the rest of the infusions go. 

Like the doc said, the iron deficiency still doesn't explain my weight loss, night sweats and other symptoms. But at least I can start feeling better while they are piecing together the puzzle!

NOTE: Actually, night sweats can be a Red Flag of IDA.

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kelly / virginia

Hi Ronnetta. My sister sent me your youtube video and so glad she did. :)
I'm a 56 year-old, very active figure skater. My health has declined for 6-7 month. I've lost more than 12 lbs totally unintended. (I'm 95 lbs.) Doctors thought I had cancer because weight loss & abnormally low white, red, rct, hct, iron, etc, and lymphocytes are way up (not good). I share my story because oncologist had a bone marrow biopsy set for tomorrow (3/24) but called and thought Iron infusion sessions (8 of them) may be better and if that doesn't work, a bone marrow biopsy will happen.

Wish me luck and thank you so much for your incredible work!! :)

NOTE: Kelly, I do wish you the best of luck and hope that you will keep us posted!


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erin / ohio

I read your story and felt like it could have been written by me, right down to the iced tea habit and conversations about which restaurants have the best ice (it's Sonic for me). I was diagnosed with anemia a month ago. My hgb was 9 when I was diagnosed but dropped, drastically, after a menstrual cycle two days later. I realize I have been dealing with this for years based on my insatiable need for ice, etc. It was Thanksgiving when I finally slowed down enough to realize I felt horrible. The more I paid attention to my body, the more I felt as if I were dying. The weight loss, terrible pain in my back, arm and tingling/numb left hand and fingers were what convinced me to see my doctor. I was pleased to hear I wasn't terminally ill when I received my diagnosis but I naively thought I would take iron tablets and "get over it" quickly. A month later I am still dealing with crippling exhaustion. If I walk a few feet I am breathless and dealing with heart palpitations, dizziness, nausea, "whooshing" sound in my ears and the feeling as if I'm running a fever but none registers. The pain has subsided a bit but I'm still prone to painful joints, legs, arms and chest. I am fortunate to currently be on Christmas break, from the school I work at, but I'm terrified at the thought of returning next week when I feel so lousy. I feel as if I'm losing my mind because I look "normal" on the outside but I'm falling apart inside. I'm 48 years old and I'm sure I've been dealing with anemia since the birth of my daughter 12 years ago. I've just never been so terribly low and so unable to pull myself out of this. I appreciate you sharing your story so that we can all know that it's not "in our heads." I feel better knowing that I'm not out of shape and this isn't menopause. I just hope and pray that I see some relief soon.

NOTE: Praying for you too, Erin.

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nina / washington

My name is Antoinette (Nina), and I am a 21 year old college student and a Washington state native. 

Little did I know, I have been anemic almost all of my life and didn't really realize it until 4 or 5 years ago. I had been addicted to eating ice all of my life. When my parents let me start making a lot of my own food choices as I grew up, I decided that I wanted to be a vegetarian! I was never a huge fan of meat, and tried to cut most of it out of my diet to become a progressive, healthy eater.

Unfortunately, that was a huge mistake. My natural tendency to not absorb iron as easily as the average person mixed with some poor eating choices left me severely anemic without even knowing it. It got to the point where I couldn't even do sports anymore or climb the stairs to my dorm room without feeling totally sick. 

I went to my doctor and began a regime of iron supplements and dietary changes, but it only helped a little. I started blamig my issues on just beig lazy or inactive, and no one knew why I was so lethargic and pale all the time. 

Finally, I was recently referred to a hematologist for a presumed bleeding disorder. Instead, he just found that I had the lowest iron levels he has ever seen, especially in a 21 year old girl! Just this week I went in for my first iron infusion, and 6 hours later I walked out exhausted but happy I had finally nailed down my life long problem. My anemia could have gotten the best of me, but luckily my family and I never gave up and always looked for some more answers. Hopefully now I am on the right path and on my way to becoming "normal" or as close to it as I can get.

NOTE: Nina, thank you for being so brave to share your story. SO many girls your age are struggling. I hope that you are able to stay on top of this dreadful cycle and don't fall into its trap again. It's not easy, it's not a one time fix, but you are smart and I know you can overcome IDA! Best of luck to you!

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sandy / tennessee

I've been battling low iron for 5 years. I've had days were I couldn't even lift my arms. I've been taking Iferex for 4 years with little improvement. Tomorrow, October 14, 2014, I go for my first IV infusion. Should be interesting.

Thank you for your video, it has enlightened me a little. I can't wait to feel normal again. I know it will take about 4 weeks but oh to have energy to do something beyond just working.

Thank you again for your video. 


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thabang / south africa

I had a blood transfusion in 2008 because my Hemoglobin was 6, and was low in a very scary way, but I didn’t know until I had a constant headache that couldn’t get healed. This was caused by my heavy periods, so the doctor gave me contraceptives to regulate my periods and iron supplements. She also advised me to eat iron rich food like chicken livers and spinach. I did exactly that. 

I kept going to the doctor, a few months later to check my iron levels, I was happy to discover that I was okay and my periods hadn’t been heavy. It’s now 2014, 6 years later, my periods are still okay, I stopped taking iron tablets because another doctor told me that I don’t have to continue with the pills since I am now okay. Suddenly I notice that I am pale, I have fallen asleep when I’m driving a number of times, I eat ice cubes irrespective of the weather, my feet are freezing cold together with my hands, I fall asleep while on a phone conversation, that’s just how tired I get. A few months back I had heart palpitations, ran to the doctor , did a blood count, she said I’m okay. When I am at work, I go for a 5 minutes nap in the toilet, I am exhausted, and I shouldn’t be because I go to gym and drink lots of water and try my best to eat healthy. 

The doctor said I’m okay but I can feel that the manner my feet are freezing it can’t be normal, I did my research on Google, I got worried, then changed my doctor. She did a blood count, told me that my iron levels are on 5 but my Hemoglobin is okay for now. She mentioned that 5 is very low, spoke to her today, and she has subscribed iron pills for me. I am now worried but I will make sure that I drink my meds. That’s my anemia story and I am 26 years old. I plan to have my first baby next year, but I have read about how iron is important for development of the baby during pregnancy, so I am worried that I will have a baby that is deformed? I don’t know if I am just panicking but I’m worried. 

NOTE: Thabang, you definitely want to make sure that you have healthy iron levels prior to getting pregnant and it will be important for your doctors to monitor you closely during pregnancy as well. Best of luck to you!

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vivian / texas

I have had my iron low since I was a young girl but never realized that it had had gotten worse as I got older. Now I am 40yrs old going through this is horrible, you would not figure it is bad until you go through the symptoms.

I was diagnosed with Pernicious Anemia in May of 2013, now May 2014 I am still going through different testing and constant blood work being done. My doctor has me on B12 injections and will probably be on them for the rest of my life. I cannot absorb B12 due to the intrinsic factor on the lining of my stomach, same thing with my iron. I have been taking different kinds of iron pills and none have worked for me. I get blood work done every 2 months and my levels are always low even taking 3 irons a day for a month never worked. So now I am having iron infusion (Venofer) once a week for 8 weeks, after that is done will go back and do more blood work and see if my levels have gone up. My levels usually range from 4-6. My symptoms are a foggy memory, I forget a lot, shortness of breath, my hair is very thin, very pale, dark circles under eyes, always cold, eat lots of ice, unbalanced, jumpy for any little noise, felt exhausted after a good night's sleep like if I never slept ,heart beats fast, dizzy, loss of appetite, I can keep going with all kinds of symptoms. I just want to get back to the way I was before healthy and full of energy. I am doing my best eating and exercising to get myself back to where I was. It's just sometimes I just don't have the energy to do anything but I push myself for my husband and 3 children and 1 granddaughter. They are my world to me. I thank you for your time and thank you for listening. 

 

 

 

 

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yolande / south carolina

When I was 25, I woke up one morning to get ready for work and while I was in the shower, I blacked out. I huddled in the corner of the shower until I came to and then shut the water off. Before I could even get out of the shower, I started blacking out again. When I finally made it out of the bathroom, I waited in fear until the doctor’s office opened because I had no idea what was happening to me. I called and made an appointment that morning. At the doctor's office, they drew my blood and told me that I was severely anemic and that my iron was very low. They told me I needed to eat better (meaning more often and more food) and take iron supplements. So off I went to purchase the iron supplements.

After about a month of taking the supplements, I was in so much discomfort (constipation and bloated stomach) that I stopped taking the iron. I didn’t try any other options at the time and just figured that I would have to deal with the side effects for the rest of my life. I'm learning that this is a very common series of events for Iron Deficiency Anemia (IDA) patients. 

I've heard that a classic symptom of IDA is feeling cold. Well, I'm always cold and feel like I can never get warm. We all know that anemia is associated with fatigue, but what exactly does that mean? I always feel run down and exhausted, and I often think to myself...Why do I always feel so lousy and tired? It's not like I'm going 100mph or that I’m old. I'm only 31! 

I have also had heart palpitations, but I'm just now putting two and two together and realizing that rapid and/or irregular heartbeat can be a big "Red Flag" of IDA. In the past, I’ve talked to several doctors about these symptoms and they pretty much just brushed it off. I had no idea that IDA can lead to a heart attack. That really gets my attention.

I recently bought B12 vitamins thinking that would help. They do help some, but I am still fighting the battle. I'm glad to know about getyourironup.org and I now realize that I have to put myself first by getting educated, taking this disorder seriously and taking control of my iron health. I'm looking forward to learning how to make easy adjustments to my diet and treatment that will hopefully allow me to get my iron up!


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JESSE / ALABAMA

I had posted under the "you are not alone" article. Since then I have had a holter monitor test on my heart which showed I am indeed having many palpitations but that my heart is okay which my doctor told me she expected. That gives me a little relief to know that my heart is okay, just working hard to get oxygen to my body.

I also had an endoscopy and colonoscopy which were totally normal and showed no reason for my body to be having issues with iron. That leaves my monthly cycle as the likely culprit...and I'm looking into getting a hysterectomy to eliminate my cycle.

I would love advice with all of this. Overall, I feel okay. The worst thing is these terrible heart palptitations that make me feel like I'm going to have a heart attack.

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KIM / INDIANA

I began seeing an internist in February for some lingering ‘female issues’ I’ve been having for a few months – very heavy cycles and bleeding between cycles. I was also experiencing a lot of pain in my lower abdomen, lower back, and pelvic region. In addition to ordering an ultrasound to check things out, she also ordered some blood tests to check all my levels. 
The ultrasound came back showing I have a cyst on each ovary (5cm on the left, 3.5cm on the right which also appeared to have some blood inside it); the progesterone seemed to slow things down a bit, and I definitely felt a bit more energy and overall mood improvement. But because of the blood in the cyst, my doctor ordered some additional blood work to see what was up. I had previously been diagnosed with von Willebrands Factor – though it was a seemingly mild case. She wanted to test my levels again to see if they were still indicating a deficiency, or if that was a fluke. She ordered a complete blood count (CBC), Iron Panel, and PT/INR (clotting) panel. She also referred me to a GYN who ordered a thyroid test. The nurse read the results over the phone, but went through them so fast I requested to have copies available. She also mentioned the iron infusion that was ordered for me, but provided very little information on the process. I was very frustrated that I wasn’t given a lot of information about what to expect, how to prep, any restrictions, etc. I didn’t even know how long it will take, or how much time I’ll be away from work! (Thank goodness for a very flexible supervisor!)

Left to my own devices, I researched on my own, which always has drawbacks. All I seemed to find was negative experiences with iron infusions – the bad side effects or allergic reactions that people had. I could find very little in the way of positive news! This is mostly the reason I’d like to share my story with you – in the hopes it may help someone else!
Someone once said to me, “How could you not notice something wasn’t right?!” Well, read through the list – they all seem like very common ailments, don’t you think? I mean, if I went to the doctor every time I felt a little light-headed or tired, I’d be there all the darn time! All the things in bold are things I’ve experienced for so long I couldn’t even tell you when it started…things that I could easily attribute to other causes (out of shape, overweight, high blood pressure, etc)…and one is a bit TMI, so sorry in advance.
• Weakness and fatigue are the most common symptoms of anemia. Even iron deficiency without anemia can reduce working capacity in some people. (I attributed this to being really out of shape – it often feels like I’m carrying a really heavy back-pack or sacks of bricks. My legs and arms feel so heavy.)
• Shortness of breath on exertion (Again, thought I was just out of shape…)
• Rapid heartbeat (Didn’t happen all the time, but I’d get the weird fluttering…)
• Lightheadedness or dizziness (several times I’d get so dizzy the room would spin, especially during “that time”)
• Headache
• Lack of libido
• Ringing in the ears (tinnitus) (I tried so hard to explain this one to people, but it just wasn’t making sense! It was like a very muffled constant throbbing noise in my ears…thought it was a sensitivity to the power substation across the street, or maybe high blood pressure)
• Irritability and other mood disturbances (Do I really need to elaborate on this one?!)
• Pale skin (however, healthy-looking skin color does not rule out anemia if a patient has risk factors and other symptoms of anemia) (…who goes to Florida and doesn’t at least get a little bit of sun? Uh, me.)
• Mental confusion (Constantly forgetting things; failing to remember to bring something to work, etc. No recollection of Chris telling me some things, when he swore up and down he had…)
So those seem like pretty ‘normal’ symptoms, right? Things that are common or well-known, and not embarrassing in the least…well let me change that for you.
Keep reading… 
• Pica. One odd symptom, which in some cases is also a cause of iron deficiency, is pica. This is the habit of eating unusual substances, such as ice (called pagophagia), foods that crunch (such as raw potatoes, carrots, or celery), or raw starch. The pica often stops, particularly in children, when iron supplements are given. Pica is difficult to detect because patients are often ashamed to admit to such cravings. (This. It is so weird, and sounds so crazy… I have no idea how else to describe it, but I would want to chew on the weirdest things!! Popsicle sticks, drinking straws, chewing gum, the really dense ice cubes like the ice machine downstairs, apples, carrots, broccoli, etc. Sometimes smells or textures trigger it – the smell/texture of pencils, lumber, etc… See, weird. Not something you really want to admit to a lot of people out of fear you’ll be committed.) Pica. Many people attribute this to people with psychological disorders or mental illness, and is present in a lot of children. It ranges from just chewing on things like my case, or actually consuming the non-edible/non-nutritive substances like rocks, clay, chalk, soap, and many MANY other things. There is no known reason why this is a symptom of anemia – one theory is that it may have something to do with whatever minerals/vitamins the body is deficient (not sure how soap works into that). I am very lucky because my case is merely chewing on ‘normal’ things – drinking straws, wooden popsicle sticks, pen caps, etc. I never understood this – I thought it was something to do with my teeth or just an OCD trait, but it all makes sense now.
And get this – about the whole month prior, I’d eaten apples, carrots, and broccoli like crazy; my straws looked like a small puppy got a hold of them! Since I’ve started on the iron supplements and the Venofer infusions, I haven’t noticed nearly the impulse to chew on things! It just dawned on me today at lunch, as I was passing over the broccoli on the salad bar. It’s truly amazing there would be a connection to this!

So, as you can see – very common symptoms for a very common ailment, but one that can wreak havoc on your life if you don’t get it checked out! If you are extremely tired and lethargic feeling, talk to your doctor about it – don’t be afraid to ask about getting your iron levels checked or other blood work to narrow down the cause. 

Fast forward a year (almost exactly) later, and I had another blood work panel done. I wanted to know how I was doing after the three rounds of infusions and the (admittedly inconsistent) iron supplements. This last panel came back almost as bad! My hemoglobin and hematocrit are pretty low, but when I pressed the doctor about it she just said “Oh your levels are just low.” Yes – I know – but WHY?? Do I not absorb the iron I’m ingesting? Am I losing that much blood that I can’t keep up with producing more iron? Inquiring minds want to know!!

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DEBBIE / VIRGINIA

I had gastric bariatric surgery in 2011. I have consistently taken iron supplements orally daily. My ferritin is too low and I'm exhausted everyday. I had my first iron sucrose infusion today.