What It's Like to Have Anemia and Get an Intravenous Iron Infusion

Updated on February 5, 2018
Cari Kay 11 profile image

Kay has struggled with chronic iron deficiency anemia for nearly 14 years. Today, she is no longer anemic.

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Introduction

Having suffered from iron deficiency anemia for nearly 14 years, I've put together this article to share my experiences with my first round of iron infusion therapy. You'll hear the good. You'll hear the bad. You'll hear that this is probably one of the best treatments I've ever had.

I do apologize ahead of time—my story is rather lengthy, but I have been dealing with anemia for some time now. If you are about to begin iron infusion treatments, I hope you find this page helpful and can learn something from my experiences.

My History With Anemia

Congratulations! It's a Girl—and a Case of Iron Deficiency Anemia!

In 2003, we welcomed our second child into our family. Not only did we gain a daughter, but I also gained a case of iron deficiency anemia that has only recently been resolved.

My Daughter's Birth

I don't believe I had ever struggled with anemia before my daughter was born. At least, I'd never been told I was anemic. When I was pregnant with my daughter, I had a planned C-section. Several days after the birth, I was taking a shower in my hospital room when I either passed out or came close to passing out. To tell you the truth, it was all a blur. The doctors gave me some little red pills but never told me what was going on. I just figured it was birth-related, took the pills for a week or so, and then forgot all about them.

Several Months After Giving Birth

For several months after having my daughter, I was tired—really, really tired. But I had just had a baby. How many moms of infants do you know who aren't really, really tired? I didn't think anything of it until I dropped my son off at kindergarten one day. I was walking back to my car while carrying my daughter. I stepped off the curb, and next thing I know, I'm on the ground looking up at all these people helping me. I had passed out. Thankfully, I had somehow managed to twist around and land with my daughter resting uninjured on top of me—I was pretty banged up.

My doctor, after doing some blood tests, discovered I was anemic. She asked if I was still taking those little red pills. I told her no—I didn't know they were for anemia, and I didn't know I was anemic.

According to the World Health Organization, roughly 30% of the world's population is anemic!

I Started Taking Iron Supplements

I won't bore you with a lot of details. I will tell you that I struggled with anemia for the next eight years. Normal hemoglobin levels for women are between 12 to 18 g/dL. I would bounce back and forth between 6 and 11 g/dL. I have not had normal hemoglobin levels since having my daughter; it has even gone down below 5 g/dL, the threshold at which blood transfusion would be required. Rather than giving me a transfusion, they just increased my iron supplementation.

For eight years, I took every type of iron pill available. None of them worked well. I just wasn't absorbing iron. One brand, Slow Fe, did stand out from the rest because they didn't give me any stomach problems common with iron supplements. It's available over-the-counter. I recommend talking to your physician about it. However, over time, even this gentler brand started causing stomach problems, so I tried other brands of iron supplements.

I tried changing my diet. Everybody had their little tips and tricks. I tried them all to no avail. I was told that if I pushed through the pain of taking iron pills for another month or so, I'd get my level up to the 10 and 11 g/dL range, and everyone would be satisfied. However, months later, I started feeling the effects of anemia again, and it was starting to affect my heart.

Still No Answer

None of my doctors knew what was causing my anemia. Some suspected it was related to my cycle and scheduled me for an endometrial ablation. It ended up being canceled the day before the procedure becaue another doctor believed that due to my bicornuate uterus, the ablation would have caused more problems. Instead, I had two colonoscopies. Currently, due to the pain I have when taking iron pills, they believe the issue might be upper GI but we still don't have that answer.

Considering Iron Infusion Therapy

In 2009, I had a physician who ran the gamut of tests and sent me to a hematologist to consider iron infusion therapy. However, soon after that appointment, we moved across the country. I found a new physician, but they wanted to start from square one. They were worried about my heart, so I had ultrasounds, stress tests, lots of blood work, and they weren't keen on sending me to the hematologist, so I didn't push it. Look back, I should've forced the issue.

The Anemia Affected My Heart

Several nights before Thanksgiving in 2011, my heart started beating erratically. It felt like it would stop momentarily and then start beating really fast. I was having a tough time breathing and was getting a bit scared. My husband took me to the ER. I told them that I knew it was my anemia. Hours later, they came in to confirm that fact and told me that I was right on the border of getting a blood transfusion. I really didn't want one, so they told me to go see a hematologist.

"Anemia is neither normal nor harmless and may have far-reaching effects."

— National Anemia Action Council

My Hematologist Recommended an Iron Infusion

The morning after my ER visit, I scheduled an appointment with a recommended hematologist. I must admit, having an appointment at the local cancer center was a little unnerving. Everybody in the center was wonderful, though. Normally you go to the doctor's office and everybody is all business. I found everybody here to be very friendly and cordial. The staff joked with me and put me at ease.

The physician's assistant took my blood and ushered me into the exam room. Shortly after, the doctor came into the room. She took my history and asked routine questions. Once the results of the blood test were brought in, she promptly announced that I needed an iron infusion as soon as possible. Of course, we would need to figure out what was causing the anemia, but the infusion would solve my immediate problems. She told me I could have the first infusion in the morning. My hemoglobin was at 8 g/dL, which I thought was pretty good. I've had lower levels, but given my history, she felt iron infusion therapy would help.

12% of women aged 12 - 49 are iron deficient.

— anemia.org

What Is Iron Infusion Therapy?

These are common questions that I have asked or that people have asked me. In a nutshell, iron infusion therapy is when iron is delivered into your body through your veins.

Why not take iron pills?

Some people, like myself, just struggle with iron pills. Either the iron is not absorbed or they have so many side effects that they make life even more uncomfortable. Constipation, stomach upset, and stomach cramps are the common side effects iron supplements. I would have terrible stomach pains whenever I increased my iron intake.

Are there side effects of iron being delivered through an IV?

The quick answer is yes. The most serious side effect is a possible allergic reaction that, in some cases, can cause anaphylactic shock. I was told that other side effects could include rashes, joint pain, headaches, and flu-like symptoms.

With the risk of a serious reaction, why do people agree to take iron intravenously?

You have to determine which is worse, the reaction to iron or your anemia. In my case, anemia adversely affected my heart. I struggled to get through each day because I was so exhausted. I've had doctors tell me that if I didn't get this fixed, I might not live to see my children grow up. Yes, anemia can be that serious. For me, getting free of anemia was worth the risk of a possible allergic reaction to the infusion.

Are there safeguards in place in case you do have a serious reaction?

This was one of the first questions I asked my doctor. She told me that, yes, they have had patients have serious reactions, but they were closely monitored. If somebody starts to show the signs of a reaction, they know what to do. She said most patients have milder side effects if any.

Will I feel better once the IV is removed?

No. Even though I knew this, I remained hopeful. Each person is different. I've talked to women who were back in their usual routine by the next day, but there are some who needed a few days of rest. Plan ahead. Schedule your appointment right before the weekend so that you can take a couple days of rest if needed. For some of us, it may take up to four or five weeks before we really feel a difference.

According to the CDC, the number of visits (to physician offices, hospital outpatient, and emergency departments) with anemia as the primary diagnosis is 5.3 million annually.

My First Infusion Experience

I arrived at the cancer center at 8:30 am and was promptly ushered back into a large room filled with recliners. The nurse told me to pick a chair. Being a little nervous about the procedure, I chose one right in front of the nurse's desk. About 3/4 of the chairs were occupied with chemo patients, but I saw one other woman with a rusty, red iron bag. Some people were napping. Some were watching television. Some were plunking away on the keyboards of their laptop computers. All were hooked up to IVs. Because there was Wi-Fi, I decided to catch up on the news.

By 9 am, I still was not hooked up. The nurse said there was a problem with my insurance, but they were working on it. I never found out what the problem was, but by 9:30 am, a nurse came over to insert the IV. At this point, I was chatting with my son online. I asked the nurse if she could give me the IV in my arm rather than my hand so I could continue to type comfortably but she explained that they preferred to use the hand and that it was just easier overall. Easier is good, so I was fine with that decision.

Source

Lesson Learned:

Drink a glass of water before your infusion appointment. The extra fluid will make it easier for the nurse to find your vein and help avoid the discomfort of repeated jabs.

I Started Feeling Dizzy and Extremely Tired

After she inserted the IV, I continued typing away with my son. After a few minutes, the room started swimming, and I could no longer focus on my computer. I wasn't sure why, but I quickly typed that I had to go and closed my computer. I felt like a little schoolgirl as I raised my hand to get the nurse's attention. It turns out that they had put Benadryl in my IV to reduce any allergic reactions. I knew I was getting it, but I thought it would be in pill form.

Let me just pause a moment to say, oh my goodness, Benadryl in an IV really packs a punch quickly. The room was swimming, and suddenly, I was beyond exhausted. The nurse told me that many of the patients liked to take naps once it hit. I was fine with that suggestion. The nurse brought me two blankets because I became very cold as well. I think I was asleep before she began the iron infusion.

I woke up maybe an hour later to see that the iron was dripping and my hand, where the IV was inserted, was throbbing a bit. The pain was not bad, though. It was just uncomfortable, so I didn't say anything. Thankfully, I fell asleep again. When I woke up about a half hour later, half of the patients had left. My hand was a little achy but, again, very bearable. I also found that I was a bit itchy and began scratching my neck and head. I was more than halfway through the bag though and was happy about that. The room was no longer swimming, but I was still pretty tired. I got on my computer again but only lasted about five minutes before I decided another nap sounded wonderful—and it was!

My iron IV bag.
My iron IV bag. | Source

I Experienced Some Stomach Pains

I woke up to some stomach pains. This was not worrisome for me because I had the same pains when I was taking the iron pills. They subsided after a while. Soon afterwards, the iron bag was just about empty, and the nurse came and freed me from it all. I was supposed to have another transfusion the following week, but since I had a very busy schedule that week, they scheduled my next infusion two weeks out.

As I headed home, I still felt tired. After about a half hour at home, I felt even more tired, so I laid on the couch. I woke up several hours later beyond exhausted—even more so than when my hemoglobin levels were really low. I joked with my family about feeling like actual iron had been pumped into my body because my legs felt leaden just walking around the house.

Recovering at Home

Long story short, for the next five days or so, I was exhausted. I also felt feverish. My body was a bit achy, and I had a dull headache the first night. Thankfully, all of this took place over the weekend, so my husband was able to help with the kids while I just slept.

I felt a bit depressed as well. I began to think the treatment was not working and wondered what I would do. Thankfully, on the sixth day, I woke up feeling a lot better. I won't say I felt like Superwoman, but I had no problem getting back into my usual schedule.

Up until my next appointment, I was still tired and taking frequent naps, but having had anemia, I was used to that. A couple days before my appointment, I started to worry about the next infusion. I didn't want to go through that extreme exhaustion again. I think I would have talked myself out of the appointment if my husband hadn't convinced me not to. He told me to try it one more time and see if it would help, so I did.

Keep in mind, it may take more than one infusion and at least a few weeks to see results.

My Second Infusion

Again, I showed up at my appointment bright and early. This time, they had me hooked up to the Benadryl within ten minutes. The nurse felt that my exhaustion the last time might have been from the Benadryl. I explained that I have always been a lightweight when it comes to medications. She said they could lower the dose a bit, but because of my itchiness before, I might also be more susceptible to a reaction from the iron if the did. I would much rather deal with exhaustion than hives or some other time of reaction, so I told her to keep the regular dose.

I was prepared this time. I brought my pillow from home and got my two blankets ahead of time. Within a couple minutes, I was out. I slept longer this time. When I woke up, I saw that I had gone through quite a bit of the iron bag. I was itchy again—a bit itchier than the first time. I also had a few stomach pains, but my hand did not hurt as much this time. I also dozed off again once or twice.

I think the second time was easier. Perhaps part of that was just knowing what to expect. When everything was done, they scheduled lab tests and a follow-up doctor's appointment two weeks out.

I went through the same exhaustion this time, but it only lasted two days. I had talked to a couple of other women who said they reacted to the Benadryl the same way, so I am sure it was the Benadryl that caused my fatigue. I did not have the flu-like symptoms this time, and after two days of rest, I was back in my routine once again.

Lesson learned:

Next time I start experiencing symptoms of anemia, I'll skip my general practitioner and OB and make an appointment with my hematologist instead. I really feel like she was a miracle worker.

My Follow-Up Appointment

They took blood samples right away. Looking at my results, my doctor said that I was still slightly anemic but that my hemoglobin levels had risen to 11 g/dL (at 12 g/dL, they become normal). I don't think my level had been this high in years, so I was thrilled! The doctor looked pleased as well. She said the real indicator would be the ferritin levels, but those results would be back later in the week. She told me that I had had no detectable ferritin at my last appointment. Wow! She also told me that if my ferritin levels rose enough this time, they'd see me again in six months (unless I started showing signs of severe anemia again). All in all, I was very pleased with how my hemoglobin had risen so quickly.

Several days later, the nurse called to congratulate me. Not only had my ferritin levels gone from non-existent, but she said they were excellent! I was so thrilled that I would have gladly named my daughter after this doctor in appreciation. However, my daughter, being eight, is rather attached to her name, so instead, I heartily thanked the nurse.

Two Months After My Last Appointment

I felt wonderful! I wasn't running marathons or anything like that, but I had spent a number of years with no energy at all. Naps were a common thing with me, and I was exhausted at the end of each day. At this point, I was able to go out walking quite a bit. Naps were no longer a necessity.

Are you struggling with iron deficiency anemia? Are you going to start infusion therapy or have you been through it already? I'd love to hear from you. Leave a comment below!

Are you anemic?

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Have you had iron infusion therapy for anemia?

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If you have had an infusion, was it worth it?

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If you have had an iron infusion, have you had any side effects?

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What were your side effects (if more than one, pick the most serious)?

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© 2012 Kay

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    • profile image

      Sue 

      40 hours ago

      I plan to start the infusion tomorrow

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      4 days ago

      I often describe the second day feeling like real iron was pumped into my body. Body feels heavy and sluggish. Hope you are feeling 100% again soon!

    • profile image

      Norma 

      10 days ago

      First infusion yesterday, I cannot tell if I’ve had side effects, was feeling tiredness before, restless night last nite & feeling s bit sluggish all day! Is this common after first infusion??

    • profile image

      Sally 

      2 weeks ago

      I just finished my 5th infusion and still feel tired. I keep being told that I will eventually feel better and I’m hopeful. Has anyone felt momentary hot flushes? Started happening after the 3rd infusion.

    • profile image

      Bibi 

      2 weeks ago

      I had two episode of dizziness after my infusions. Do you now do monthly infusions?

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      5 weeks ago

      I'm so sorry Elle. It always took me four weeks or so before I started feeling better. Hope you feel better soon.

    • profile image

      Elle Paisley 

      5 weeks ago

      One thing to note...I made sure to get my phosphorous tested prior to my infusions to be sure my level was normal. If anyone feels severe joint and/or back pain post infusions, see your dr right away and insist they check your phosphorous. A drop in your phosphorous can happen 10-30 days post-infusion, and can be very dangerous.

    • profile image

      Elle Paisley 

      5 weeks ago

      I finished the last of 2 Injectafer infusions last week. My side effects were fatigue, stomach cramps & headache. They were not horrible and were much less severe after the second infusion. But I don’t feel any different. I’m still exhausted & napping. Don’t get my labs done until August. How long does it take most people to feel like they have more energy? So far, I’m disappointed in the results, but maybe it’s still too soon to tell.

    • profile image

      Lynette 

      6 weeks ago

      My 15 y/o dtr is going for an infusion. Your article was great! Thank you so very much for sharing your story. I am hoping the infusions will give her more energy. How long until you felt like your energy was increasing?

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      2 months ago

      Great to hear that your infusions are easy on you. That would make this much easier!

    • profile image

      Margaret Lowe 

      2 months ago

      I have had anemia for several years .I need Venofir infusions when my Ferritin & hemoglobin levels get low.I have had Venofir with no Benadryl added & have had no untoward reactions at all.I had a hysterectomy 30 years ago.No known cause other than malabsorption of iron from food was found after tests of all kinds. I am having an endoscopy next week to check if my hiatal hernia is bleeding because I needed Venofir in November , April & again at the end of May this year .A much shorter time between the Hb & Ferritin drops than before.

    • profile image

      Denmaj 

      2 months ago

      Hi, it looks like folks are still finding this blog and you are still responding.Thanks for sharing. I'm wondering if anyone developed side effects a couple of weeks after Injectafer. I ignored symptoms for quite some time thinking it was due to being a bit overweight and deconditioning. When I started having scary heart palpitations or arrythmia, it led me to my primary care doc where we started with a physical and bloodwork. At that point, found out I was severely anemic with hemoglobin of 8, iron at 18 and ferritin at 2 (so much of the past couple of years suddenly made sense). Started me on oral ferrous sulfate which I could not tolerate well enough to take some days...I suffered through taking it about every other day or so for 2 months, during which time I started feeling markedly worse. When they rechecked my iron it had dropped 5 more points in that time (they either did not test my hemoglobin or ferritin at that point for some odd reason, or they didn't share it with me...my PC has not been the most proactive through the process). My PC said to continue the oral ferrous sulfate for 2-3 more months (unbelievable) and then she would recheck and consider a referral for infusions. For the first time in my life, perhaps, I pushed a medical professional and asked to be referred right away instead of waiting 2-3 months, unless there was a medical reason why I should not go ahead and explore that option. My job is demanding and I was having difficulty performing it well and needing to work from home more and more days which is a blessing to be able to do, but isn't always possible due to travel, etc. The PC finally agreed to refer to hematology. Mine is great, he was very thorough and he felt infusions were warranted because my iron was still dropping fairly rapidly, even with taking some ferrous sulfate, and because my anemia symptoms were obviously also worsening. I had my first infusion of Injectafer 3.5 weeks ago and so I am 2.5 weeks out from the second one. I didn't feel any improvement in symptoms in the week after the first one, but they had said it might be 3-4 weeks after the second one before I would feel better. The only side effects from the first one were some slight flu-like symptoms and stomach pain the day of/after the infusion. I didn't experience any real side effects immediately following the 2nd infusion. 4 days after that one, I woke up feeling somewhat like a new person...no problem getting up and going in the morning, felt 'bright-eyed' during the day, etc. That lasted for 9 days...felt great compared to before treatment until day 10 following the 2nd infusion. On that day, I woke up feeling like I'd been hit by a truck from the fatigue standpoint and feeling bad joint pain and some abdominal pain. The joint pain was all over, but the worst was my back and the left side of my head and face, of all things. I didn't attribute any of this to the Injectafer...I do have a bit of a TMJ problem, but have never had it cause pain on the entire side of my face/ear/temple like that...it was so painful that even touching the skin caused significant pain. I have a back issue, but the back pain is unlike any I have ever felt. In addition to joint pain, I'm feeling a new type of pain in the middle right side of my back. All of this is in its 5th day and I finally started wondering yesterday if it could be due to the Injectafer and perhaps the iron stores replenishing, etc, this far post-infusion. Through the process, I've had an endometrial ultrasound and biopsy, a colonoscopy (I have a history of a precancerous polyp), and an endoscopy. All were normal. At this point, we suspect mestrual bleeding as the culprit, so I am having a Mirena inserted this coming week as a conservative first step. However, the GI will get involved again and we'll do a capsule endoscopy to check the small bowel if the anemia persists after getting the Mirena (assuming it reduces or stops my menstrual bleeding as expected). Today, 5 days after starting to feel fatigued and somewhat dizzy again, along with the new pain, I'm hoping it is side effects that will subside. I don't think it's possible that my iron would have come up immediately after the infusion and dropped again and I believe the infusion raising my iron level is the only explanation for having felt great those 9 days. I'm fully expecting this to subside and to feel better soon, but just wanted to check in with others to see if this sounded familiar at all. Sorry for the lengthy post!!

    • profile image

      K-Nel 

      3 months ago

      Brooke, if you don’t mind me chiming in, please read my story further down in the comments. I had an endometrial ablation and it cured me. No more bleeding and no more iron deficiency anemia. My cycles were so heavy that I needed blood transfusions and iron infusions. Now I’m perfectly fine. No more bleeding.

    • profile image

      Brooke 

      3 months ago

      Hi Kay! Just reading through all the comments. I have a ferritin if 4 and mine is due to my monthly cycle. It’s horrible and keeps getting worse. I have friends that have had a hysterectomy and swear by it. Do you feel like it was the best thing you could have done? If you don’t mind me asking, did you remove your ovaries as well? I almost feel like it would solve a lot of issues for me burn im not sure if I’m over doing it? I have reactions to EVERYTHING and I’m always scared to try new. Thanks so much!

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 months ago

      It can be. I think side effects vary from person to person. Hope all goes well.

    • profile image

      Kathy C 

      3 months ago

      Going in, in a week. Is constipation a side effect with infusion as with polls?

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      4 months ago

      I was so discouraged as well. In fact, I have to admit, I felt discouraged after many infusions just because I felt worse. Thankfully, though, about a month or so later, I felt terrific. Hope you are feeling better soon!

    • profile image

      Michelle 

      4 months ago

      Thank you so much for sharing your story. After my first infusion I spent a week more tired than before. I was frustrated going into my second one. I felt hopeless like nothing will help. Now I will give it more time.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      4 months ago

      The infusions can take up to four or five weeks before you feel better and, often, after the infusion, you feel even worse for a bit. Hope you feeling better soon.

    • profile image

      Tassy 

      4 months ago

      Very thankful to read this. I have been anemic for long but never really paid attention until recently my iron was at 7 and as a fill time working teacher I was struggling. Just had an iron infusion two days ago. I feel even more exhausted if that makes sense. So I will give it couple more days to see as my exhaustion could also be because I have been working much longer hours at work.

    • profile image

      TuckerMont 

      5 months ago

      I have been iron deficient for 4 years. I do have fatigue, muscle weekness, irritability, brittle nails, restless leg syndrome . The hemotologists will not see me until I am anemic. Myferritin has been as low as 9 and now at 26 which is considered normal. Oral iron is just taking sooo long to elevate. I feel frustrated

    • profile image

      Asunción 

      5 months ago

      I have had Crohns for the past 45 yrs and I am a pro at blood transfusions and iron infusions. I have had 3 colon resections and the portions of the colon that were removed and are the portions that absorb any thing you drink or eat. To my luck I have been the same weight for the past 45 yrs except when had my surgeries where I dropped 15/20 lbs

      Had 2 blood transfusions at the height of the aids epidemic and was petrified that I was going to receive a transfusion from somebody that had aids.

      Thank God I had my primary doctor test me for aids and the test came back NEGATIVE

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      8 months ago

      Wow! How many years have you been going through this? I ended up having a hysterectomy almost a year ago and haven't needed an infusions since!

    • profile image

      Kate 

      8 months ago

      Wow... this is like exactly my story down to it all starting after my second child (a csection)

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      13 months ago

      I actually need to update this. I had a hysterectomy this year and am no longer anemic! There may be others who visit who will try the nettle though :)

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      13 months ago

      Great news!!! I am so happy for you!

    • profile image

      K-nel 

      13 months ago

      Hi Kay! Yes I am happy to report that the endometrial ablation was a success! The heavy bleeding was the root cause and now that is a thing of the past! Thank God! My iron deficiency anemia is completely healed!

    • profile image

      Cyndi 

      13 months ago

      You may want to look into a simple Nettle infusion. It is like tea. You buy stinging Nettle and make it at home like you make tea almost. You can google Susan Weed Nettle infusion. I have been anemia for over 40 years and this stuff was like a miracle for me. Changed my life for $15 a month (1 LB of nettle on amazon).

    • docashp profile image

      Hashp 

      14 months ago from india

      What is the cause of your anaemia?The logical cause of iron deficiency is either reduced intake or absorption ,increased demand or increased loss from the body.So whats the cause in your case?Are you suffering from a malabsorptive disease??

    • profile image

      Marilyn Gayle 

      16 months ago

      I also am glad I found this page! Thank you! I can so identify. Two years ago I found out I was iron deficient anemic. I was extremely tired all the time, couldn't make it from one end of the mall to the other without having to sit down and catch my breath, and I would often feel dizzy when I would get up. I would feel a spongy or weak feeling in my arms, hard to explain. My hemo. was 6.9, and my doctor sent me straight to the hospital 2 days before Easter, and I had 2 units of blood. I started taking iron pills, and found out after my family doctor sent me to the Cancer center the pills were doing me no good at all, only causing stomach discomfort, and constipation. I have what is called a Tortuous colon (it's longer than most and takes a lot of twists and turns) My doctor at the cancer center feels like this is why my body does not absorb iron. I have had 4 iron infusions so far with no side effects, and I usually start to get my energy back within several days to a week. I do not have the constipation and stomach problems I had before. They are all so nice at the Cancer center, get me hooked up, bring me a coke, really spoiling me. I've accepted the fact that I will probably have to have these for the rest of my life, but that's okay! I know I'll feel good, Normal, and healthy :)

      P.S. I failed to mention that my colonoscopy, also occult blood tests were normal.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      2 years ago

      You have just been through such a time. I am so sorry. I would love to hear if you think the ablation helped. I know that takes some time and you still have to get your levels back up. (((hugs)))

    • profile image

      K-nel 

      2 years ago

      I'm glad I found this. Wish I would have found it sooner. January 29 I went to the doctor thinking I was having heart problems. My symptoms were shortness of breath, fatigue, and I don't even know how to explain what was happening to my heart. I ended up being admitted into the hospital and received a blood transfusion, three units of blood to be exact! My hemoglobin was 6 and hematocrit was 22, ferritin was 3, iron and iron saturation could not even be detected. After three bags of blood, hemoglobin went up to 9 and hematocrit 30. But crazy thing is during the blood transfusion my blood pressure spiked very high and stayed high for a few weeks even after being given blood pressure medicine. I am 46 and have been having heavy periods for a couple of years. So my periods were the root of my iron deficiency anemia. So the obgyn recommended an endometrial ablation but could not do it until my blood pressure was normal. But she gave me progestin-only birth control pills in the meantime thinking that would lessen the bleeding. I was hopeful that it was gonna work but it did not!! And to be honest, I think my blood pressure was high because of the anxiety I had with getting a blood transfusion (my thoughts get out of control) and then reading the terrible side effects of the iron infusions the hematologist scheduled me for! It was all a bit too much for my brain and nerves! Lol My first iron infusion was Injectafer. I had a bad reaction within the first 20 minutes. Felt flush, dizzy, was about to pass out, started uncontrollably crying, (not sure if the crying was from the iron or a side effect of the steroid injection they had to give me because of my reactions.) I was also shaking uncontrollably! Craziness! So they had to stop that infusion obviously! So a few weeks later I go in again to get a different iron called Venofer. They pre-medicated me with Benadryl and Tylenol this time. Everything was fine until the next day I had terrible stomach pains that brought me to tears and a bout of diarrhea on fourth day. Second infusion was scheduled one week later, did fine, had a bad headache and a bout of diarrhea and then felt fine. Skipped one week to have a D&C and endometrial ablation. So yesterday was my third infusion of Venofer. They gave me the cocktail of Benadryl and Tylenol and then infused me and I was fine while I was there. An hour after I left I broke out in hives all over my legs!! Was told to take more Benadryl and if I had problems breathing to call them, but all was well, hives went away. Was told that they will give me a steroid injection with my next infusion, which is next Monday. I sure have been tired today for some reason. Could be from the Benadryl.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      2 years ago

      Let us know how it goes! Thankfully, many women seem to have an easy time of them. Hopefully you are one of them!

    • profile image

      Suzana 

      2 years ago

      Thank you for sharing your story, I have one scheduled in two weeks and I must admit I'm nervous about it. Don't know what to expect, or if it will help. All I do know is that I'm tired of feeling so exhausted all the time.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      2 years ago

      Does the venofer seem to last longer for you?

    • profile image

      Jessica 

      2 years ago

      I can relate to your story. I too struggle with anemia. I have gone in for a total of four iron treatments. I can't seem to keep my iron levels up. They first started on the ferrlicit, which worked great the both times they used it. The only downside is how many times they have to administer it. The last two I have gone for they used venofer which I ended up liking better. It was a faster treatment and the side effects were less.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      2 years ago

      Glad to hear they are working. I know it is so nice having energy again!

    • profile image

      Stewart 

      2 years ago

      A lot better than iron tablets

      worked well for me

      I have had two now

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      2 years ago

      Please, let us know how you are doing and what they said. Was this your first infusion? What type of iron?

    • profile image

      Ashley ds 

      2 years ago

      I had one last night. Woke to a migraine so bad i threw up. Also i was just slightky bleeding when having this done but about 8 hours later thats dramatically increased. Its so bad that in less than an hour im overflowing. Im planning to seek medical attention this morning.

    • profile image

      Marilyn 

      3 years ago

      I'm seeing a lot of Vit D and B12 in addition to the anemia. I know B12 is common but Vit D? I just had mine tested and it's low, which surprised me as I spend a lot of time in the sun.

      Wondering if anyone has has this done in Vancouver, Canada. While my iron levels finally had a small jump from using Feramax (and cutting out inhibitors like wheat & dairy) but part of me feels like after 2 years of constant super low ferritin levels (and frequent dips over the years) that this is something I may try. My Dr wants to see where the Feramax gets me in 2 months and we'll talk about it then but it does seem like a real possiblity that IV is the way to normalize my iron. I'm a bit nervous about the benedryl as I don't take any medication (aside from the occasional, very rare advil).

      This has been the best run through of what to expect though so thank you for writing the blog!

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 years ago

      You are not an odd duck. I've talked to so many women who have a hard time with iron. I have a hard time with a lot of infusions as well. Talk to your doctor. They may just want to hold off on any more infusions and wait and see how your levels are doing. Then, if you need infusions in the future, they might be able to try another iron. I am so sorry. As one who has struggled with iron, I understand. (((hugs)))

    • profile image

      MsKrys 

      3 years ago

      Hi. I'm on my 6th weekly infusions. With venofer and it's almost as if pre-treatment I was below a symptom threshold (except for the ongoing fatigue and weakness) and although the last labs showed hardly any change its as if I've entered a symptom zone filled with headaches, colds, coughs, increased anxiety and headaches just to name a few. I've been so hopeful that these infusions would put me back on track but I'm feeling awful. :( everyone everywhere that I speak with or that I e read about have had awesome results. Am I an odd duck? It sucks feeling like a prisoner to my body:( ( sorry feeling mopey and hopeless at the moment)

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 years ago

      I am so sorry you are going through all of this. I hope the supplements work. Please, let us know what you find out. (((hugs)))

    • profile image

      Katie 

      3 years ago

      Hi there, I am from the UK and these infusions do not seem to be as readily available on our NHS. I have been taking Ferrous Sulfate for the past week, 200mg three times a day. My iron level at last blood test was very dangerously low and my Vit D is virtually undetectable, I am also awaiting results of a B12 blood test to see if I will be having tablets or injections as that is so low also. Cant believe all of this! If my Iron does not come up in next few weeks then I will need to ask my Doctor about having an infusion, my level is currently 4.2! Very anxious about all this and the problems it could be causing my body.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 years ago

      Hi Pat. I emailed you. Hang in there and keep us updated. Praying for you as well.

    • profile image

      Pat 

      3 years ago

      Well I am suppose to start my iron infusion tomorrow the first of two. Yes I am wary that is why I am reading what you guys have written. I also have alot of pain issues and I am in Pain Management. Also have Osteoporosis and have broken several bones. My Dr. told me she has not seen anyone with no folic acid, low iron and low b12 at the same time. Needless to say I have alot of anxiety. Don't know what to do. If someone wants to talk with me you are welcome kingp1949@gmail.com....Thanks For Any and all support!!

    • profile image

      juliemj 

      3 years ago

      I start half hour iron transfusions tuesday, 1 of 2. I am so scared. I dont want to have a bad allergic reaction. they are giving me benadryl and a steroid b4 the iron. i am so very frightened to have this done because of any reactions. i have severe panic disorder and clinical depression. the panic attacks are going to hit hard i'm sure. i don't want to die. please pray 4 me or give me good feedback. ty all

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 years ago

      I've talked to others who have gotten the ports as well. I do hope they figure out what is going on and why you are not absorbing iron. I remain hopeful that one day they will figure it out for me as well.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 years ago

      Please do update! I'd love to hear your experience with the Injectafer. For me, it varies. I can start to feel more energy about three to five weeks after I begin infusions.

    • profile image

      crystal 

      3 years ago

      I am sending out encouragements to people with iron deficiency anemia. I have had two blood transfusions and I am on my second round of iron infusions. I have been diagnosed due to not being able to absorb iron. So I could take iron pills all day and it would not help. I have had two hematologists, both with the same outlook, "let's get you feeling better". They moved forward with iron infusions quickly. I had my last iron over two years ago but recently began to receive treatments again. This time they had great difficulty getting the IV's in my arm. My new Hematologist quickly suggested a port, due to this being a long term issue that will require iron infusions over long period of time, so that I would not miss doses due to not getting an IV in. Got the port in Monday, got my iron infusion today (Friday). It was sooo easy and I am so glad the doctor moved quickly. Dr. Cuervo (yes that is his name) is fantastic and listens to me not just my tests. My ferretin was 5 and my energy was zero. Looking forward to better quality of life.

    • profile image

      Change forgetter 

      3 years ago

      I was recently diagnosed with iron deficiency anemia and per my hematologist recommendation I start iron infusion. The one used in my case happen to be injectafer, a new drug approved in 2013 which promises less side effect and less visits . The procedure itself is two visits 30 minutes each for two connective weeks. I just got my first injection and had a slight allergic reaction, itching all over my body. Ended up taking two 25mg pill form Benadryl which caused the itching to go away but left me feeling tired all day. So far I'm not feeling to different energy wise and was told it would take 6 weeks to notice a difference. My ferritin before the infusion is 0 and my hgb is a 8. I'll update on my second trip to receive the final dosage

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 years ago

      Yes, they've talked to me about steroids in the IV but, sadly, I'm allergic to any steroidal medication. I'm so glad it worked well for you.

    • profile image

      NoLongerTired 

      3 years ago

      Have been extremely fatigued for years, and saw several MDs who only ran CBC and checked thyroid, and, because hemoglobin and hematocrit and thyroid levels were normal, I was dismissed. Last year, finally found a doc who was thoughtful enough to check ferritin and my ferritin level was 13. After a year and a half of taking max oral dose of iron and ferritin never higher than 20 and recently dropped into single digits, I saw a hematologist who ordered iron dextran infusion. I have had my first infusion and get my next infusion next week. I was premedicated with 125 mg methylprednisolone IV and Tylenol, received test dose and vitals checked 5min, 10min, and 15min intervals for an hour and experienced no side effects. My hematologist is the author of this article from 2008 and is extremely knowledgeable of this: http://jasn.asnjournals.org/content/19/5/833.full. Yes, I did my own research. I felt fine immediately after my infusion and began to notice improvement within days.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 years ago

      Seems like an awful lot of treatments in one week. They space mine out by a week or more. Are you seeing a hematologist?

    • profile image

      Deborah 

      3 years ago

      Thanks for sharing your story with us! When I found out that I had to get infusions I was nervous, but hearing stories like yours helps ease the mind and is a reminder that we are not alone! I thought I would list the side effects that I experienced.

      I've had four iron infusions. Three out of the four were done in one week. I've been told that you can get a burning sensation in the spot where they place the catheter. Luckily, I didn't experience this. The last day of my infusion, when I was driving home, I was experiencing sharp jabbing pains in my lower back. They were sudden and would stop and would come back if I breathed in too deep. When I got home, I noticed I had hives on my feet so I went back to the oncologist's office. By the time I made it back to the office, they traveled up my legs and to my arms. They told me this was normal and put me back on an IV and gave me a shot of Benedryl and a shot of Steroids. They had me stay there until the hives were completely gone and prescribed me a Prednisone steroid pack to take for six days to help prevent another breakout. The back pains lasted for four days.

      Days after my last infusion, my body was achy. My joints hurt a little bit but it was more of a discomfort than pain. Another side effect that I had was a soreness on my whole body. It felt like I had a huge sunburn and if someone touched my skin, it would hurt. It didn't hurt or burn all of the time, just when someone touched my skin (gave me a hug, patted my back, etc.)

      I was told since I got that many treatments in one week, that it can be an overload on your body. I am very grateful that I didn't experience vomiting or diarrhea. Besides the side effects that I did have, I think the iron infusions were VERY worth it. I go tomorrow morning to get labs done to see how much my levels have improved since the infusions.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 years ago

      I hope it goes smoothly, Let us know how you do!

    • profile image

      Natalie 

      3 years ago

      Hi from Canada

      I'm having my first iron infusion on March 23! Thanks for your story. It helps me to be prepared. I am a bit nervous but the way I'm feeling being deficient is worse than the nervousness . Lesser of two evils.

      Again thanks

      Natale

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 years ago

      Please, let us know how it goes!

    • profile image

      Lisa bergan 

      3 years ago

      Tomorrow is my first of many iron transfusions,i'm scared but I'm so glad I read your step by step diary.I had gastric bypass is four years ago,and my body has changed for the worse

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 years ago

      Despite any side effects, I think this is so worth it as well. Thanks for the comment.

    • profile image

      Mary 

      3 years ago

      I had an iron infusion a month ago. I had a migraine that lasted five days as a result (same thing happens when I take oral iron). It was worth it though, since my iron levels went from nonexistent to normal-high!! My levels have not been normal in over ten years! Within a week I was going from sleeping twelve hours a day, to six! I have so much energy that I daydream about exercising. I am very pleased. I should mention I also had iron injections in my hips which did not budge my levels at all.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 years ago

      It is different for each person. Initially, my infusions lasted about six months then I let myself get talked into a dangerous diet (hCG) and that did something horrible to my body because I immediately needed more infusions after only weeks of the diet. After that, they went to about every four months.

    • profile image

      Mrs. Foster 

      3 years ago

      Had my first 2 infusions in September. Dr's seem happy with my levels 8 weeks later, however, I am beginning to experience some of the symptoms I had before they sent me for infusions. How long can I expect the benefits of the infusions to last ? Is there somewhere I can find a list of the acceptable bloodwork levels/values online ?

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 years ago

      Keep me updated on how it goes. I go for another infusion this week.

    • profile image

      Tanika 

      3 years ago

      I have been suffering from iron deficiency anemia for years because of malabsorption and am currently in the middle of a two week iron therapy with venofer. It was really good to just read through your journey, with your information and the links. It's also good to know it's not just me who has problems with the iron pills even with Slow Fe. In the past I've had blood transfusions because my blood cell count didn't increase enough with the pills. My current doctor is trying iron therapy only to see how well I do with that rather than transfusion followed by one iron infusion. I'm looking forward to seeing how things go with a strict iron therapy instead of a transfusion.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 years ago

      Let me know how it goes. I go back in for bloodwork this week so I may be starting back up again myself.

    • profile image

      Mocha2go 

      3 years ago

      Thanks so much for the info and tips! I have been seriously anemic for many years, my ferritin is now at 2. I've resisted the infusions when the dr brought it up in the past, but now I am actually looking forward to getting them. Hoping my dr is right and I'll "feel like a million bucks!"

      Funny thing is, I've felt this way (tired, palpitations, etc) for so long it just seems normal. Thanks again! I'll let you know how it goes. Going to have venifer once a week for 6 weeks. :-)

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 years ago

      It's hard when they don't know what is happening. Hopefully, since they may have an idea, maybe there is some solution? Hope your infusions kick in quickly!

    • profile image

      Lisa 

      3 years ago

      My anemia seems to be caused by bleeding ulcers. Cause of ulcers is uncertain but may be from being salicylate sensitive.

    • profile image

      Lisa Murray 

      3 years ago

      Have been struggling for years. Had to have a blood transfusion when my levels went under 4. I am scheduled for five more infusions over the next two weeks. I am so excited about getting well.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 years ago

      yes, when my ferritin is that low, I am exhausted. It's hard to function. Good luck with your infusion. Let me know how it goes. I'm sort of surprised they are waiting so long. When my ferritin is under 5, my doctor usually gets me in the next day.

    • profile image

      Mary Kay 

      3 years ago

      Very informative! Thank you for being so open about your journey. I am scheduled for my first infusion on the 24th. I thought I was exhausted from a super busy summer, but after trying to donate blood and being deferred, I found out my ferritin level is 3. Thanks again for all the info!

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      3 years ago

      Keep me updated on what they say. If my ferritin gets up to 50, I feel so much better. When it gets down below 20, I start tiring really easily and by 10 or below, I'm napping whenever I can. Be curious to hear what they say.

    • profile image

      Wendy 

      3 years ago

      Thanks for this. I'm being referred to a hematologist for a potential infusion. My iron levels are within normal (56 was my last, with the normal range being 30-150. I was 130 in January), but my ferritin levels are still too low (10 last year, 32 in January, 42 in July, people feel normal at 70 and great over 100). Since that's rising SO slowly, I'm hoping something more can be done. This was VERY helpful for me to read. I feel far more educated now about what to expect if the hematologist thinks this is a possibility for me.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      4 years ago

      @glosow416: I wonder if it is Dextran? I know my infusions with that were quite long. Although it isn't always fun getting these infusions, I so agree, it is worth it!

    • profile image

      glosow416 

      4 years ago

      I just had my fourth infusion and the only thing I dislike is it is an all day thing. Mine is usually 4-6 hrs long depending on how much I need. I have to get two steroids first then the test dose, then the infusion. I feel fine the day of the infusion but for 2-3 days after I am extremely tired. After that I feel great and it is definitely worth it!

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      4 years ago

      @focusonthepoint: That's what keeps me going! It's easy to feel a bit down while going through the infusions because they do take time to work but, once they do, it is so worth it! Hope you are feeling better soon!

    • profile image

      focusonthepoint 

      4 years ago

      I just finished my 4th week of Venofer infusions & have two more to go. Like Cari, this is my second round this year. I got a slight cold after the very first infusion, but with a good night's sleep I was out and about the next day. The Benadryl IV given simultaneously really helps too. Just keep in mind how much better you'll feel after you've completed your infusions.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      4 years ago

      @lzacherau: I'm guessing they are using Venofer and that is what I go through about two times a year. Many people have very mild side effects if any. I seem to react to iron so they are back to giving me a dose of Benadryl in my IV which helps a lot. Please, keep us updated!

    • profile image

      lzacherau 

      4 years ago

      I am supposed to start infusion but don't have my first appointment yet...after reading some of your experiences I am afraid of the side effects my Dr said I would have infusions once a week for 5 to 6 weeks...is this normal??? I keep reading 2 or 3 infusions. I'm just terrified of the possible side effects...I am a single mom to a 10 year old boy and can't afford not to work...I know this is something that is important to take care of just being a baby I guess.

    • profile image

      crystal-pease2 

      4 years ago

      My full story started when my period wouldn't stop my pap showed abnormal cell changes so my doctor decide to do a historectomy an thought that would improve my levels but only depressed a month later I went to my pcp because I was always tired he did blood work said my levels were dangerously low got me in to see a doctor at the cancer center had blood transfusion two weeks latter more blood work no improvement started ivi an now these symptoms I'm at a loss because I'm still week an tired as well any information would help

    • profile image

      crystal-pease2 

      4 years ago

      Hi my name is crystal an i just finished my 3 infusion I have had some joint pain nothing to bad but now I seem to have developed diarrhea an stomach cramps

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      4 years ago

      @Dixiechicnunes: I'm so sorry. I know I get a bit flustered when it takes more than one stick too! What type of iron are they using on you now? I know with the venofer, I usually have five or six infusions (one a week). Let me know how you are doing!

    • profile image

      Dixiechicnunes 

      4 years ago

      @Dixiechicnunes: Walked in ready and nervous Monday morning to conquer this task. Nurse tells me my RX has to be changed to a newer safer with less side effects. Okay, I'm game.......wait, what 8 single doses requiring me to be stuck numerous times! I am so disappointed now. Monday it only took twice of getting stuck to find a descent vein. Tuesday had me in tears with four attempts to successfully complete the bag. I know I need this but took a break from Wendsday, the swelling needs to go down as well as my nerves calm down. Gonna try this again today. Please let's get a beautiful vein on the first try to be successful the entire bag. I don't like the headaches or the upset stomach......but honestly not sure if it's the medicine or my nerves right now. Trying so hard not to be upset.

    • profile image

      Dixiechicnunes 

      4 years ago

      I'm glad I found your blog. I'm going in Monday for my 1st iron infusion. Definitely nervous and anxious about it. Over the past 4 years I've been bouncing only between 6 and 8 with my levels. Iron pills and diet aren't working here for absorption. I'm looking forward to being able to sleep without having to take medicine. I wish I could take naps! I feel better about knowing what to expect with the process. The nurse advised me over the phone today to expect being there at least 6 hours. I think I'll pack a snack bag and some magazines.

    • profile image

      patricia-olsen-35 

      4 years ago

      Hi,Thanks for sharing your experience. I just had my first infusion today. I have had a high platelet count for over two years now, along with recently extreme exhaustion that either makes it a struggle to stay awake driving home from work mid day, to daily naps that were never needed and falling asleep many evenings while on the computer sitting up! Also generally just feeling yucky all the time, nausea, headaches, low grade fever and no energy at all. After my primary Dr has been monitoring the platelets with no changes she decided it was time to see a Hemotologist, I researched the ones she referred and selected based on his reviews and being voted as the best in our area over a few years. My first appt was with a PA in the office and she went over my medical history with me and ordered my labs which were drawn that day, I was told to come back in a month and would see the actual Dr, unless my results showed an acute form of something going on, in that case I would be called to come in sooner. Thankfully no calls, so was hoping to hear nothing wrong...well seems I do have some Iron Deficiency Anemia in addition to a low B12 and Vit D and these conditions have been known to increase platelet counts, so he is hoping by having an infusion and B12 injections will lower my count. SO today I had my first infusion, I experienced most of what you did, other than itching, so far none of that, however, have had a mild headache and a very metallic taste in my mouth, a flushing feeling and maybe a bit of nausea this evening. I had done some research on my own and like many posted here, that the reactions most experience have been a few days after the infusion, so really hoping it does not happen to me, really don't want to miss any work, next week. Thanks for everyone sharing their experiences, always helps to hear from the ones that actually have lived it and not have to rely on info of well it may or may not happen, or that have not heard of anyone having a delayed reaction. I did ask my nurse today, after getting my test dose and then when no reaction she brought the real thing and it was noticeably a much stronger and full strength bag....she did say yes it is and that some reactions patients have had did not come along until they were in like the last 45 min or so of the drip, which mine was 4 hrs, that most them felt like and itching throat or shortness of breath. Her advice to me if any reactions after leaving the dr office was to go to ER or call 911 and not to waste time trying to reach the Drs office. Keeping fingers crossed it won't be necessary.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      4 years ago

      @rachellmn: You are not alone! I get a little bugged when nurses have acted surprised by my side effects but other nurses have let me know, they see it a lot. I also hear from many people who have a tougher time. Overall, though, this is very much worth it. Hope you are feeling better!

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      4 years ago

      @ljeskew3: I am so sorry you are going through this as well. In fact, I've in the middle of a round of infusions this month. Since I wrote this page, I've probably gone through five more rounds. For me, the Venofer is definitely easier. In fact, they've started giving me IV Benadryl with the Venofer (usually they don't do it with this particular iron) and it has really lessened my side effects. Happy about that. I'm so used to the infusions now. It really is not a big deal. Keep me updated on you!

    • profile image

      ljeskew3 

      4 years ago

      hi kay. wow you really been thru it with your anemia. my name is lisa, and i too am going thru alot of the same things that you are. i have been iron defecient for 10 years now. ive been on every prescription iron, and ever otc iron pill avalible. the latest one being vitron c, which my dr. highly recommended. anyway its been such a battle. my levels run between 6 and 10 most times. I like you started to have problems with my heart, felt a lot of fluttering and skipped beats. very scary stuff. i even saw a cardiologist too. i had to figure out on my own that this was related to not having enough iron in my body. i go back today to see if my levels are up from taking the vitron c. which has caused me to have so many gi related issues its not funny. my doctor has said that if this didnt work he wants to set me up some intr iron therepy. i just wanted you to know that your journey post, have helped me . i glad you put these up for others to read, because i didnt know what to expect. im still nervous about possibly starting the iv iron, but your information is so detailed at least il know what to expect. i also was diagnosed with fybromyalgia back in 2006. lucky me. im a little worried about how my body is going to reacte with the iv iron. anyway again thank you for sharing

    • profile image

      rachellmn 

      4 years ago

      I'm so glad to have found your blog. When I've told my doctor that I feel like crap afterwards he laughs and tells me "no! you should be great." He only started to believe me after he told me his daughter had the same feeling after her infusion. Now he is a super great guy this not believing me when I told him how I felt was the only thing that I didn't love about him. I'm so glad that I'm not alone in feeling this way.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      4 years ago

      @tara-mclaughlin1: That is so awesome! Having energy just makes such a difference! Keep us updated :)

    • profile image

      tara-mclaughlin1 

      4 years ago

      @Cari Kay 11: I am definitely considering asking to be referred to a specialist. I have been feeling so much better since the treatment, it's amazing to finally be able to live my life instead of feeling like I can do little more than eat and feed the little ones. Thanks again for your support and for your information. :)

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      4 years ago

      @tara-mclaughlin1: Oh my goodness. I am so sorry that you went through all this. So scary! Are you seeing a hematologist? Almost everybody who contacts me has their infusions at the local Cancer Center and they are really good at monitoring you for side effects. I would really consider finding a new doctor. That is just so scary. Please, keep me updated!

    • profile image

      tara-mclaughlin1 

      4 years ago

      I'm not sure what to think right now but I am so glad I read your blog. Here's my story: I had my first IV infusion (Ferric Carboxymaltose) 9 days ago. I am 39 years old, had low iron in both pregnancies (2011 and 2013) and since my last birth a year ago have had extremely heavy periods. I started feeling extreme fatigue and dizziness and intense mood swings a few months ago. I was told by an urgent care doctor that I was anemic but my gp said no, I was not anemic but my iron was low. We started on oral iron but I developed severe headaches. We went next to IV iron. The doctor said there were no side effects except very rarely people can have an allergic reaction. It took 30 minutes and I was sent home. I felt a bit heavy-limbed and dizziness set in as I walked home. About 20 minutes later I noticed I was itching everywhere. Welts popped up on my arms and legs, my ears and hair itched. I called the doctor and was told to come back in. They gave me an injection that scared the crap out of me. As the itching subsided almost immediately, I began to feel like I was losing consciousness. I couldn't lift my arms, I couldn't tell if I was breathing. I was afraid I was going to pass out or die on that table. The doctor seemed so surprised that I would react this way to the anti-allergy meds as all my vitals were normal. After reading your post about getting the allergy meds beforehand and falling fast asleep, I see this is normal. I am questioning whether I should trust my doctor. It seems like, even though she says she does IV infusions all the time, she doesn't know how to handle it in all its possible scenarios. I am upset that she sent me home immediately instead of observing me for a half hour after. (Thank goodness I live across the street from her.) Her instructions at this point is to watch from improvement in the next 2-4 weeks and if things are still bad, return for another blood draw and appointment. If I'm feeling better, check iron again in 3 months. I'm hopeful I don't need another infusion, but at least, if I do, I know from your experience that the extreme sleepiness is part of the deal and I'll know what to expect. Thanks for sharing.

    • profile image

      beth-bresslermcgee 

      4 years ago

      I am scheduled for my first infusion this comming wed. Feb 19th. I am nervous. I am scheduled for 12 weeks one infusion a week. From what I have been reading this seems like alot. My iron has been low for years but after having Rhumatic fever this past November it really impacted all of my blood counts my iron has not improved and has gotten even worse since then so hopefully this works and I feel better soon and won't be taking 2 or 3 naps a day. any words of wisdom for the nervous nilly here.

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      4 years ago

      @Baymouse: Please update after your infusion. I'd love to hear how it went. Hopefully it'll be a breeze and you'll be back to old self in no time!

    • profile image

      Baymouse 

      4 years ago

      Thanks for your blog! I have stage 5 kidney faliure and am super anemic, so,,, tommorro, Tues. Jan. 28th I'll get my first iron infusion. As with anything new, I'm nervous. I had a blood transfusion a couple years ago and they gave me 2 pints of the "good-stuff" as I called it and I felt a lot better with in a few days. I remember that night I was so weak! Just lifting my hand, my hand had to weigh at least 50 pounds! It's was a strange time. Any who, just wanted to tell you Thank you for shareing your experience as now I have an idea of what to expect. :)

    • Cari Kay 11 profile imageAUTHOR

      Kay 

      4 years ago

      @katiejasmine: That is such good news! Congratulations! I'm so glad you shared this with us. It gives me hope :)

    • profile image

      katiejasmine 

      4 years ago

      I'm back...It's been almost a year since the infusions started & went Friday for the 11th one & YAY, didn't need it...ferritan is 342, dropped 3 points in 3 months, so will recheck in April..a year ago I was passing out all over the place & am feeling so much better...

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