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Intravenous Iron Infusion and Me

Updated on March 28, 2015
Iron IV bag photo belongs to cari_kay. Please do not copy without permission
Iron IV bag photo belongs to cari_kay. Please do not copy without permission

Iron Infusion and Me

Hi. I'm Kay. I have been suffering from Iron Deficiency Anemia now for the better part of ten years.

I've put together this page 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 treatment is probably one of the best things I've ever done.

I do apologize that my story is rather lengthy but I have been dealing with anemia for some time now. If you are reading this page and are about to begin iron infusion treatments, I do hope you find this page helpful. I welcome your comments.

Are You Anemic?

Are you Anemic?

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

-or- My History with Anemia

Just over eight years ago, we welcomed into our family our second child. Not only did we gain a daughter, I 'gained' a case of Iron Deficiency Anemia that has never quite resolved.

The 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. With my daughter, I had a planned C-Section. Several days after the birth, I was taking a shower in my room in the hospital when I either passed out or came close to passing out. To tell the truth, all of it was 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 them for a week or so and then forgot all about them.

Several Months Later

So, for several months, I'm tired. I'm really, really tired but, I just had a baby. How many moms of infants do you know that are not really, really tired? I didn't think anything of it until one day when I dropped my son off at Kindergarten. I was walking back to my car in the parking lot 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 passed out. Somehow, I managed to twist around and land with my daughter resting uninjured on top of me. I was pretty banged up. My doctor, after taking blood, realized I was anemic. She asked if I was still taking those little red pills and I told her that no, I didn't know they were for anemia and I didn't know I was anemic.

Fast Forward Eight Years

I won't bore you with a lot of details. I will tell you that I've struggled with my anemia since that time and with each and every doctor, one of the first things they say is, "Did you know you're anemic?" Normal hemoglobin levels for women are between 12 to 18. I would bounce back and forth between 6 and 11. I have not had normal levels since having my daughter. My hemoglobin level has even gone down to below five (considered transfusion level). Rather than a transfusion, they just upped my iron. For the next eight years, I would battle anemia with every type of iron pill available. None of them worked well. I just didn't absorb iron. I changed my diet. Everybody had their little tips and tricks. I tried them all to no avail. If I pushed through the pain of the iron pills for a month or so, I'd get my level up to the 10 and 11 range where everybody seemed satisfied but only months later, I'd start feeling the effects of anemia and it was starting to affect my heart.

Let me just say, of all the iron, one pill did stand out from the rest. Initially, I had no stomach problems with Slow FE. You can purchase it over the counter at any local pharmacy. If you are struggling with pills and have not tried Slow FE, talk to your physician about it. It releases slowly and just seems gentler. After awhile, though, even these pills were causing problems and so we moved on to the next pill.

No Answers

Nobody knows what is causing my anemia. Some doctors suspected it was related to my cycle. I was scheduled for an endometrial ablation that ended up being canceled the day before the procedure. Another doctor believed that due to my bicornuate uterus, that procedure would likely have caused more problems. I've 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.

Iron Infusion Therapy

Three years ago, I had a physician who had run the gamut of tests and was sending me to a Hematologist to investigate iron infusion therapy. However, just after that appointment, we moved across the country. I found a new physician here but they wanted to start at square one. They were worried about my heart so I had ultrasounds, stress tests, lots of blood work but they weren't keen on sending me to the Hematologist and I didn't push it. Honestly, I figured a Hematology appointment wouldn't provide much in the way of answers. How wrong I was.

ER Visit

Several nights before Thanksgiving of this year, my heart started really behaving erratically. It almost felt like it was stopping and then would start beating really fast. I was having a tough time breathing and really 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 and announced that I had anemia and I was right on the border of getting a transfusion. I really didn't want one and they told me to go see a hematologist.

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

— National Anemia Action Council

Fast Forward to the Hematologist

The day after my ER visit (or really the same day since I was in the ER overnight) I called to schedule 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 thereafter, the doctor came into the room. She took my history and asked questions. Once the results of the blood test were brought in, she promptly announced that I needed an iron infusion first and foremost. Of course, we needed to get to the bottom of what was causing the Anemia but, the infusion would remedy quite a bit. She told me I could have the first one in the morning. My hemoglobin was at 8 which I thought was pretty good. Hey, 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?

some questions I asked or have been asked

In a nutshell, iron infusion therapy is iron being delivered into your body intravenously.

Why not take iron pills?

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

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

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

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

Like myself, you have to weigh which is worse, the reaction to iron or your Anemia. In my case, my heart was being affected. 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.

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

Funny you should ask because that is one of the first questions I asked my doctor. She told me that, yes, they have had patients have serious reactions but they are closely monitored. If somebody starts to show the signs, they know what to do. She said most patients have more mild side effects if any.

Will I feel better once the IV is removed?

No. I think even though I knew this, I remained hopeful. Each person is different. I've since talked to women who were back in their usual routine by the next day and there 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 many of us, it may take four or five weeks before we are really feeling a difference.

According to the CDC the number of visits (to physician offices, hospital outpatient and emergency departments) with anemia as the primary diagnosis:

5.3 million

My First Infusion

because this is why you are reading my story

I arrived at the Cancer Center at 8:30am. I 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 nurses 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 9am, I still was not hooked up. The nurse said there was a problem with insurance but they were working through it. Never found out what the problem was but by 9:30am, a nurse came over to insert the IV. By 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. After she had the IV inserted, I continued typing away with my son. After a few minutes, the room started swimming and I could no longer focus on my computer. Not sure why, I quickly typed that I had to go, closed my computer and felt like a little schoolgirl as I raised my hand to get the nurse's attention. Turns out, they had put Benadryl in my IV. I knew I was getting it but I thought I'd be taking it 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 was suddenly very cold as well. I think I was asleep before she had the iron hooked up. I woke 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 so I didn't say anything. It was more uncomfortable. Thankfully, I fell asleep again. When I awoke about a half hour later, about 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 was scratching my neck and head. I was more than halfway through the bag though and happy about that. The room was no longer swimming but I was still pretty tired. I took out my computer but only lasted about five minutes before I decided another nap sounded wonderful (and it was!). I awoke to some stomach pains. This was not worrisome for me though because I get the same pains when I take those heavy iron pills. They subsided after a bit. Soon afterward, the iron bag was just about empty and the nurse came and freed me from it all. They scheduled another infusion two weeks out and I was done. I was supposed to have the next infusion the following Friday but because the next week was a busy one for us, they agreed that waiting an additional week would be just fine.

I was still a bit tired but also found that I was really hungry so I pulled through a drive through and headed home. After about a half hour at home, I was feeling even more tired so I laid on the couch. Next think I know, it's several hours later. I woke up feeling beyond exhausted. I must admit, it felt almost more so than when my 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. Long story short, for the next five or so days, I was exhausted. I also felt fluish. My body was a bit achy and I had an achy sort of head ache the first night Thankfully, being the weekend, my husband helped with the kids and I just slept. I have to admit, I felt a bit depressed as well. I was beginning to think the treatment did not work and now what were we going to do? Thankfully, on day six, I woke up feeling so much better. I won't say I felt like Superwoman but I had no problem getting back into my usual schedule. Until my next appointment, I was still tired and taking naps but with my anemia, that was just the way it had been. A couple days before my appointment, I did start to worry about the next infusion. I didn't want to go through that exhaustion again. I think I could have talked myself out of the appointment but my husband would not let me. He told me to give it one more time and see if it helped. And, so, I did.

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.

My Second Infusion

two weeks later

Again, I showed up at my appointment bright and early. This time, they had me hooked up to the Benadryl within ten minutes of being seated. 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 said that because of my itchiness before, I might also be more susceptible to a reaction from the iron. I'd much rather deal with exhaustion than hives or some other time of reaction, so I told her to dose me up. 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'd gone through quite a bit of the iron bag. I was itchy again and this time perhaps a bit itchier. I also had a few stomach pains but my hand did not hurt as much this time. I think I dozed off again once or twice. I do think the second time was easier. Perhaps part of that was just knowing what was going to happen. I finished my appointment and they scheduled labs and a doctor's appointment two weeks out. Again, found myself famished and hit the same drive thru on the way home. I did go through the same exhaustion this time but it only lasted two days. I'd since talked to a couple other women who said they reacted to Benadryl through the IV the same way so I really do think it was the Benadryl that caused that reaction. I did not have the flu like symptoms this time and after two days of rest, I was back in my routine once again.

My Appointment

after two infusions

Again, the staff at the Center were great. They took blood right away and sent me back into the waiting room for a bit. They then called me back into the doctor's office and she appeared about ten minutes later. She had my levels. She said that I was still slightly anemic but they had risen to 11 (at 12 they become normal). I don't think I've had levels at the 11 range in years, I was thrilled! The doctor looked pretty pleased as well. She said the real test would be the ferritin levels but those would be back later in the week. She did tell me, though, that I had had no detectable iron at my last appointment. Wow! She said, if the ferritin 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 iron levels gone from non existent but she said they were excellent now! Let me just say, I was so thrilled that I would have gladly named my daughter after this doctor in apprecation. However, my daughter, being eight, is rather attached to her name so I, instead, heartily thanked the nurse.

Have you had Iron Infusion Therapy for Anemia?

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

Please, keep in mind, there are a number of people who visit this page after only one infusion and it takes at least a few weeks to see results!

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

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Fast Forward Two Months

that's two months after my last appoinment

You are probably wondering how I feel now. Let me just say, I FEEL WONDERFUL! Honestly, I don't think I've had this much energy in years. Now I'm not running marathons or anything like that but I've spent a number of years now with just no energy. Naps were a common thing with me and I was exhausted at the end of each day. Now, I'm out walking quite a bit. A nap is no longer a necessity.

Lesson learned:

Next time I can tell my Anemia is an issue, I'm skipping my general practitioner and OB. I'll just make an appointment with my Hematologist. I really feel like she was a miracle worker.

New Precautions for IV Iron Administration

in the European Union

The new precautions seem to be modeled after precautions already taken in the United States:

New Precautions Recommended for IV Iron Supplements

Iron Comparison

Dextran vs. Venofer

Because I am now about to start a new iron, I wanted to compare the two main types.
Treato.com compares the side effects and reactions of the two among hundreds of patients:
Iron Dextran vs. Venofer.

If you'd like to see the side effects for each:

Iron Dextran Side Effects and Reviews

Venofer Side Effects and Reviews.

Just scroll down and click on each one to learn more.

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.

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. I try to answer all messages but often get to my email a bit more quickly. You can contact me at CariKay11@gmail.com if you'd like to talk. Thank you!

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    • docashp profile image

      Dr Ashish 13 days 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 2 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 image
      Author

      Kay 15 months 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 15 months 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 image
      Author

      Kay 15 months ago

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

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