June 7, 2014


Anemia Relief: Iron Infusion Changed My Life

Anemia Relief: Iron Infusion Changed My Life

By Lisa Batten Kunkleman

Anemia is my enemy. Finally, after decades of fighting, I found an ally. I had an iron infusion. Whoever heard of such? Not many people. I know because I asked around, hoping somebody knew anybody who had this procedure and thought it was wonderful. I never found such a person until after my infusion. Then a friend said to me, “Just wait about three months and you’ll feel like jumping fences. It helped me feel so much better.” Oh, how I wish I had spoken to her sooner. What I found beforehand were chat rooms where people shared their horror stories. Perhaps when all goes well, people don’t have time to write success stories. They are too busy out living to tell how fabulous the treatment was and how thankful they are for going through with the very scary infusion.

I finally called the doctor’s office where my procedure was scheduled and had a one-to-one, phone-line chat with an infusion nurse. She said, “Don’t go back on the internet. It will scare the crap out of you! Most of our patients who experience problems have stomach cramps or headaches and need Phenergan for nausea and to help sleep through it. We’ll give you Benadryl and Pepcid to prevent allergic reaction and help with stomach problems and do a pretest to see how you tolerate the iron before we proceed. Now stay off the internet!”

Good to know. But all the scary stories were spreading like weeds in the garden of my mind. I couldn’t forget the woman who had nausea and aching joints for two weeks even though she felt fine throughout the procedure and the reaction hit her two days later. And there was another woman who couldn’t control her bowels or leave her house for days after her infusion and even experienced migraines when none had existed before.

In my mind, I wouldn’t be out of the woods until a week had gone by after the infusion and I was still myself with no new ailments. My husband Dan even tried to talk me out of having the procedure because I shared some of the on-line stories with him. It was like a gamble: trade one medical situation, anemia, for another mystery ailment behind door number one, two, or three.

I needed to go through with the infusion. My ferritin level, or iron stores, constantly stayed too low for me to walk without chest pain and other symptoms that interfered with daily life. My hemoglobin was low the first time I tried to give blood at age eighteen and remained that way consistently through the years. Before that, who knows? Taking iron helped a little but for some reason I just don’t absorb iron properly through my digestive system. Doctors have explored other reasons for my chest pain, shortness of breath, occasional weakness of limbs, rapid heartbeat, ringing ears, hair loss, headaches, lack of energy…. I even went through complete heart studies twice, as well as pulmonary, gastric, and neurological studies. Blood tests found Lyme Disease among other disorders and in 2011, I spent three weeks at Mayo Clinic in Rochester, Minnesota to find answers. The first answer the Mayo doctors found immediately was my ferritin level was three and the doctors there like it to be at a minimum of one hundred. My best average level in several years was a whopping eleven. Woo Hoo. I came back to North Carolina with treatments for IBS, Lyme Disease related issues and new kinder, gentler iron tablets.

Even gentle iron can be rough on digestion. In total frustration, at my physical exam in 2013, I asked my general practitioner to give me a shot of iron because with my IBS (Irritable Bowel Syndrome) I could not tolerate oral iron. All these years he’d told me, “Please, take the iron,” and I forced it down just to function. That’s the only way I could keep going but still my ferritin level would hardly rise at all for some unknown reason. My doctor referred me to a hematologist for blood work and to discuss the possibility of an infusion. The hematologist and I agreed that I should try an infusion and hopefully it would help with the problems I’d dealt with for the last few decades. He was very encouraging and thought I’d feel much more energetic and get rid of many of my anemia symptoms. If so, it would be miraculous.

So, at 8:15 am, six months ago, Dan and I met with the medical practice insurance woman who was delighted to see we had an easy insurance policy. We jumped hurdle number one and moved on to number two. The large, open room held fifteen recliners flanked by upright padded chairs and an IV pole for each patient. I was the first patient of the day and could have my pick of the chairs. That was too big a decision for me so I deferred to my nurse Casey. She said, “I’d take this one so I could look outside. You’re going to be here for quite awhile. And it’s close to the snacks and the bathroom.”

At 8:30, Nurse Casey had a little trouble fishing around for a vein and finally gave up on the one on the top side of my wrist after I sang Rollin’ rollin’ rollin’ catch that vein it’s rollin’ (parody of the theme song from an old TV show, Rawhide). So other than having to switch to the top of my hand for the IV, everything went fine. Dan even watched the great vein expedition and didn’t get dizzy as he used to during our fertility clinic years, four kids ago.

They gave me oral Tylenol, then IV Benadryl and Pepcid to ward off an allergic reaction and stomach cramps. I felt a warm flush from head to groin immediately as IV-administered meds tend to do before MRI’s, CT’s, and such. A familiar feeling. Then woozie-headed and thick-tongued, I asked Dan to take my notebook and continue journaling, as I would likely be sleeping soon. I was right. This was my prep before they ran a test dose to see if I would have an allergic reaction to the iron. Handling the IV iron well, they allowed me to move on to the Big Bag.

Nurse Casey said, “This should take about four hours.”

Starting slowly, Nurse Casey came back two more times and sped up the drip each time since I was tolerating the iron so well. No nausea or urge to run to the bathroom as some people experience. Yay!

I got home at 1:30pm and took a nap. I was tired and my stomach felt peculiar. Supposedly one can have effects for several days after but I suffered very little discomfort. At bedtime, my head hurt and my back seemed a little funky and it felt like there was a squirrel nibbling on my left ovary or one part of my small intestine. But all in all I felt really good. My head hurt some and I needed more rest than usual for a few days.

Fast forward three months and my iron and ferritin levels were slightly above normal, which was terrific especially if it would hold. Six months later, my levels held steady and I feel better than I have in at least twelve years. I’m able to walk without the crushing chest pain and wooziness in my head. I am working on the deconditioning that came from not being able to exercise properly for so long. My skin and nails are healthier. My head feels oxygenated, I have more energy, and perhaps even think better. I may have found my fountain of youth and health. I only regret not finding it years ago. There are no guarantees that it will last forever but for now, I am thankful. An infusion may not be the right choice for many with chronic anemia but after reading only negative information on-line, I felt duty-bound to at least share my success story and get the word out to those people who may benefit as I have. Iron infusion is worth discussing with your health professional if you or a loved one live with chronic anemia.

126 thoughts on “Anemia Relief: Iron Infusion Changed My Life

  1. Reblogged this on Life Stories and Beyond and commented:

    Hoping this provides another option for people with chronic anemia to discuss with their doctors.

    • “Stay off the internet” xD

      And yet here I am! I’m having my first infusion tomorrow
      Male, 38, active, hectic job
      A little nervous, very hopeful
      Thank you for writing about your experience, gives me even more hope

      My story if it helps anyone:
      My issues probably started several years ago
      Drank a lot of Pepsi Max for 1 year, then puked for 1 year… yeah, no good experience
      Atleast I only drink water now!
      3 months ago I sat in the sauna (I’ve been kind of ok the last years). After, it felt like I had ran up a hill with dehydration…
      Tried the sauna again 2 weeks later but lighter this time and with a shorter time period, puked acid, never done that before

      2 months later at work I got a “panic attack”, or so I thought. My limit was simply reached
      Although this time I also had chest pains, which got me worried…
      Wanted a doctors appointment, got sent to the ER (oh, the exaggerated drama I thought)

      100 of 120 or 150 red blood cells, and 4 (!!) in ferritin levels. Could be worse but -18 to -33% less than needed is still rather horrible… and for a male, up to 500 in ferritin is normal/high. So yeah

      Went to the ER 2 times, the second time I actually got help. Or “help”, I got part of a diagnosis atleast, after waiting 16 hours (had to call an ambulance for the first time in my life, completely crashed)
      That’s when I received a proper doctors appointment with an examined blood value, and the meeting for an iron infusion – again which is tomorrow. 2 is planned in total

      I’ve contemplated angina, broken heart syndrome, myocarditis, cancer…
      Well, turns out that stress and an insufficient diet can go a long way after all!

      As add-on symtoms I’ve had an eye-ticks, restless legs syndrome (nasty, zinc helped 80%), no concentration, no “will”, cold, the sauna experience, paler than usual, dry eyes (?), lesser apetite, not depression/anxiety per se but something similar and odd…

      Take away message: check your blood levels every now and then, it costs less than the suffering I’ve gone through

      Thanks for reading, hope it helped

      • My goodness you’ve had it all. I hate you’ve gone through all this. I hope the infusion helps with many if not all of your symptoms. I really struggled with weakness and headaches and chest pain and rapid heart rate with exertion. Also the restless legs and insomnia were a bear. It was miserable. I certainly feel for you. And I will be thinking about you as you’re getting your infusion. Let me know how it goes. I will say that mine did not heal me overnight, but over a matter of weeks I started to feel better and over a matter of months I really felt the difference. I look forward to hearing from you, Lisa.

  2. xxx thank you

  3. Thank you for sharing your story, I have been considering doing this for a few months. It’s really great to hear such a positive tale where iron is involved!

  4. Wow, Lisa. What a journey it’s been. I am so glad you’re better.


  5. Oh, it’s a reblog. =) I read it through thinking otherwise bc I saw the BY LISA… above the post. =)

    • Hi Diana. Yes, I sent it out again as I think it’s an important topic many physicians fail to mention to patients as a possible option. Thanks. It has been quite a journey. I’m feeling good.

  6. Thank you for the positives. I had my first infusion. second is in a week. Zero complications here. I’m at 6 and can’t wait to check my numbers in a month. I thought my tiredness was depression. But realize now it was the low iron. I’m excited to be on the path to better days.

  7. That’s fantastic. Glad that it worked so well. My girlfriend had an infusion recently and I had Potassium at ER. Why are we so short on essential elements? Thank you for the follow.

  8. That is great that you could find such wonderful relief! So glad it worked for you and a great idea to share the idea in hopes of helping others out there who may suffer from anemia.

  9. I got an iron infusion too!!!! My ferritin was 6. That stuff is pretty amazing isn’t it!!! I’m curious what the Mayo clinic gave you for IBS and how you are treating lyme.

    • Mayo found many things. First was that my ferritin was 3, and that my nervous system was broken. Well messed up due to several situations in the past. Possibly Lyme but also from a life or death bleeding episode with my first tubal pregnancy. I’d been told I had miscarried but actually the embryo was stuck in my tube and making me hemorrhage into my abdomen for at least two weeks. It was one of the most painful things I’ve ever experienced. So much worse than childbirth. Like insides are being sliced and stabbed. A nightmare. By the time I got to the hospital I was in shock with pints of blood pooling in my abdomen. Blood pressure beyond lowest low. I was white and my palms were gray. They gave me a blood transfusion and did a full laparotomy to get the embryo out. So, when the doctors examine medical history and saw that, one told me I had Sheehan Syndrome. Associated with extreme blood loss during pregnancy. It damages the nervous system and can lead to the next condition which they said was causing many problems, pain in my chest upon exertion. I had had several heart workups by that time and it was not my heart at that time. My chest hurt like crazy when I’d walk to our mailbox or lean over or especially on any incline. I had reflux also but that was not the cause either. So, they called the condition visceral hypersensitivity. Pain in organs when there is no reason for there to be pain. Related to my eating which made it worse. I couldn’t walk after eating without stopping constantly to let chest pain and lightness in my head settle. The big vegus nerve (excuse spelling) that runs from chest to stomach sent pain signal to my chest after eating. I ended up on several meds which worked well until I became allergic to them. One was hyosciamine.The other was metropolol, a beta blocker to control my blood pressure and heart rate. Now I’m on Bentyl to calm my stomach so it doesn’t sent the pain signals. It works well most of the time. I also take atenalol, a beta blocker that I tolerate. I wouldn’t take anything for that visit to Mayo. It’s like Disneyworld for sick people. So thoughtful and concerned and interested. Also, we enjoyed the set up at Rochester Minn. They had fares uptown where patients walked and wheelchair’d around and we all were experiencing the same thing. The Bentyl helps my IBS as well I think.

      • I know about the vagus nerve because it is affected in dysautonomia /pots which my daughter has.
        The mayo clinic we have been so many times. It is where I was diagnosed with my muscle disease and my daughter with dysautonomia.
        I know about all the meds. We have tried them too.
        I am so sorry you have been through so much, the tubal pregnancy that led to so many other health problems. That is so much for one person to go through. I’m glad you have answers but I know answers don’t always mean everything is fixed!

  10. Thx for sharing! This is encouraging. I had 1st infusion and week ago and 2nd infusion 3 days ago. I do not feel any better yet. Debilitating fatigue and joint pains. My ferritn was 3 also. I tolerated infusion fine although did have a headache for about 5 days but it was tolerable. So I won’t give up hope that u will feel better hopefully soon

    • It took several weeks for me to start to feel better. Then my ferritin shot up to 500ish before leveling off around 100. I hope yours works quickly but if not hopefully you’ll feel it in a month or two. I’ve never had another as it’s still holding. Good luck. Let me know how it goes.

  11. I’m pleased for your success with this. Best wishes.

  12. Thank you so much for sharing. I had my first infusion today and your post inspires me to think that even though I’m having headaches and tiredness now, that maybe I will feel better than I’ve felt in 20 years if the infusions work for me as well. Thank you for sharing.

    • I hope your results are as good as mine. I think it was almost a month before I felt like myself and had more energy. I was tired and headachy for awhile but not bad. Better than I was even after first two weeks I think Good luck. Let me know how it goes. Yay

  13. Thank you for this story, I too just had an infusion….. after 6 years on adderall and eventually becoming addicted to it for energy, although there were no benefits anymore. I finally feel like myself again. I’m exercising, my body is sore , but nothing I can’t handle. My iron infusion has brought me back to life.

    • That’s wonderful to hear. Thanks so much for sharing. I remember reading all the scary reviews people had posted and canceling mine in fear. I’m so glad I decided to follow my gut and get the infusion. Life changing in a good way. Thanks again for letting me know. Please stay in touch and let me know how you do over time.

  14. Thank you so much for sharing your story! I keep your post up and have reread it several times to encourage myself. I have a lot of the symptoms you suffered with, including a miscarriage where I hemorrhaged. My ferritin was 2.7 in July of this year when I was admitted to the hospital due to heart palpitations and shortness of breath. I also have GERD which complicates my whole symptom picture considerably. When I get short of breath, my heart pounds and then my chest burns and I don’t know if it is from reflux or the breathing spasms. Either way it can leave my chest irritated for hours. I finally was referred to a hematologist in September when my hemoglobin became borderline low. She ordered two infusions, one week apart. It’s been two weeks since my last infusion. Last week my energy was awesome but the shortness of breath and tachycardia has stayed the same, along with my stubborn GERD. I have been very careful with my diet the past couple years…whole foods, well-rounded meals with no gluten, dairy or sugar. I feel discouraged because I was hoping my most aggravating symptoms would at least be a tiny bit better by now. My cardiologist wants me to go ahead with a heart ablation to stop the fibrillations…he said iron won’t improve it. How long until you noticed improvement with shortness of breath and your rapid heartbeat? Has your reflux improved also? I’m sure I need to be patient with myself here but I’ve been miserable for so long and I’m greatly hoping for some symptom relief! Thanks again for giving us readers hope and a place to open up and know we are not alone or crazy! 🙂

    • I’m so thrilled that I might have given you hope. It took me a good month before I started really feeling my energy return. I can’t say it helped my GERD as that’s a constant struggle for me. I do best if I eat half what I would normally and eat other half a little later if I’m still hungry. Indrink very little when I eat as it kind of flushes Hingis back up. I avoid most acidic foods and find tea and coffee and chocolate are not my friend. And I love them. I use far too many alkaseltzer chews especially near bedtime. I worry about aspiration lying in bed. I’ve done that several times and it’s almost worse that childbirth. So painful. Chest is on Fire and it’s far worse than reflux. If you’ve never had that, be very glad. So lungs do not like having food go back down into them if you have reflux and it goes down the wrong pipe.
      I am on hold about ablation but wonder if I’ll eventually have it. I am on beta blockers to help regulate heart rate and blood pressure. I’m happy to talk anytime. I hope you feel better very quickly. Oh btw I had an emergency gallbladder removal recently. Huge stone in there. More fun. I do think getting that out may have helped reflux a little.

    • Just reread your reply from 2018 and I’m wondering if you ever had the ablation. I had one in December and as of today I’m able to walk better with the chest pain. I do have shortness of breath at times but I think it’s due to lack of exercise and needing to build up my stamina. I’m supposed to monitor that and get back with the cardiologist if it does not improve as I’m able to walk more. If you haven’t had the ablation and you want to talk about it let me know.

      • You have no idea how perfect the timing is of your comment! I did have an a-flutter ablation back in February 2019. It wasn’t adequate to give me relief because I also have a-fib. I’ve tried to heal myself on so many angles. Let’s just say I’ve been around the block with various health practitioners. By fall 2020, I thought I was finally turning a corner as my a-fib seemed to be responding to some natural therapies and electrolyte supplements. And then, out of the blue, one of our teenagers had kidney failure and my life hasn’t been the same since. Our child is now back home and stable with a great prognosis if she gets a kidney transplant. But the stress took its toll and my afib is back and very brutal. I just saw my cardiologist and EP, and my a-fib ablation is scheduled for March 30. I feel kinda sad, and scared, but hopeful that there are better days ahead. I used to think I could somehow get back to my pre-afib self, but now I realize that I need to stop looking back. I really appreciate you reaching out to me. I hope you are feeling great and that your ablation continues to be a success!! If you have any time, I would love to hear your ablation story, whether you have to be on meds, and your progress thus far. Also, if you have any advice for pre/post ablation, I’d love it! Take care, and thanks again!!

    • Just an update. I had an ablation in December 2020. Several hospital incidents convinced me. I’m so glad I had it done. It took awhile to feel like myself. Maybe five or six months but it was worth it. I’m wondering about you.

      • Hey Lisa! Thanks for inquiring! 🙂 Yes, I had the ablation done on March 30th. I am SO grateful and wish I wouldn’t have waited a total of 7 long years to have it done. I tried so hard to heal it naturally…it is a persistent, perplexing issue for sure! Living with symptomatic afib is so emotionally and physically draining. My family has been so long-suffering with me over the years!! My recovery period after the ablation wasn’t easy and it took me all summer to regain my strength. I still have a couple of odd beats here and there, but NOTHING like those dreadful afib sessions that lasted for hours at a time. I’m still working at improving my health by eating right, exercise and especially sleep/rest…anything to keep afib from coming back. I am so thankful for the improvements we have both had, and hope we both get to continue to enjoy better days ahead with our loved ones!!

  15. I’m glad you followed my blog for many reasons. One being this post! I’ve never heard of iron infusions. I have the same anemia/iron storage problem. I’m going to mention this to my doctor. This was several years ago, so how do you feel now? Is it a one time infusion or do you need to get several?

    • I’ve had two infusions now. Each one worked like a charm. After about a month I felt back to normal. Energy, less shortness of breath, heart/chest pain regulation. They lasted several years. My ferritin levels stay up for a long time. I hope it’s an option for you. Btw I see you’re in NC as well.

  16. Thank you for this. I’ve suffered from iron issues since I was 5 (35 now and a long story). I’ve never known what normal feels like. Finally my fatigue and dizzy spells hit such a point my doctor took notice. Today I met with a hematologist and I’m scheduled for infusions next week. I’m super nervous but your realistic account has put me at ease. Thank you.

    • You just made my day. I’m thrilled that my experience can help.

      • Absolutely! I’m also a Blogger and Streamer (mental health) and you have inspired me to just maybe do my own documentation as well. This experience has been very emotional (especially given the longevity of it) and I think I could help someone. You are so right, no one is talking about the positive. I’m hopeful I will be one of those positive and can bring more representation.

        • Can one person make a person’s day two times in a day? Yep. You did. Thanks so much for the kind words. Can hardly wait to see what you do.

          • I’m happy I could spread a little joy. I’m curious about whether you have a follow up. Did you need ongoing infusions? We’re there any more post iron pros and cons you noticed? Any suggestions on reconditioning old habits? I have my first infusion scheduled tomorrow and par your suggestion I have stayed off the internet. Should be fun! 😊

            • Mine hold a few years. I’ve had no problems and no need to change anything. No matter how much iron I took in by mouth it didn’t absorb into my system. I’ll continue having infusions as needed. No fear. One thing you should be aware of is that they will probably give you Benadryl via IV at first as a precaution and it might make you drowsy just in case you have any type of a sensitivity to the iron. At least that was my experience. It may not be yours at all. I wish you luck and I look forward to hearing how it goes.

  17. with regards to your wooziness, was it constant? like just lingering there. this is my last symptom and its just soooo slow. it interferes with life alot. gives me some hope you got better 🙂 i am currently on iron infusions.

    • When are you asking about? I was woozy often. Thought it might be related to POTS which many women especially young women have. Often even blacking out when rising from squat or seating or sitting on floor or leaning over. That was huge for me and I had both situations going on. Hard to tell what was causing what. I was weak and felt almost drunk at times walking. Top of my head felt funny. It’s been a long time. If this doesn’t answer the question let me know and I’ll try to rethink answer. When did you get your infusion?

  18. My infusions are for 6 weeks. 2 a week. This week is my 4th week.

  19. Wow! A wonderfully helpful article. Thanks so much! I’m booked in for my first infusion next week! I was a little nervous, but this article has really put my mind at ease. Super excited now about getting my energy and my life back!!!

    • You’ve made my day. Im so thrilled for you. Keep me informed.

      • I experienced quite a bit of flushing and mild-moderate headaches after the infusion. This subsided after 2 days.

        I then had about half a day where I felt a huge burst of energy and vitality! It was amazing but unfortunately soon passed. I then felt really tired again.

        Since then, I’ve felt v tired and fatigued. Have also experienced nausea and feeling sick and v depleted after short periods of low intensity exercise, or running simple errands…

        Did you experience any of this? It’s been 5 days since my infusion and I’m feeling terrible today! So much fatigue, weakness and brain fog…much more than in the last few days. Hoping and praying it lifts soon and I feel healthy and energised!

        • I’m sorry you’re having such a tough time. I did experience some exhaustion and headaches In the beginning and I would say it took me somewhere between two and three months to fully feel the consistent improvement in my body. It was worth it. Everybody’s different I hope you start to feel better very soon. Right now I guess you’ve got a major dose of something new in the body and it is saying what the heck! Hopefully it will get used to it soon. Stay in touch.

        • I hear ya!

  20. So glad to have read your story! I am a 66 year olds female with decreasing Hb over the last 2 yrs after a tkr. Finally got an internist involved and am on my 3/4 bag of iron. Feel good for about 2 days then listless again. Hb at 72 and ferritin has increased to 22. Praying that I will make some Hb soon. No sign of blood losses anywhere. Your articles give me hope that I can actually function again.☺

    • I’m pulling for you to feel better soon. It’s so
      Hard to be listless and want to do things but just don’t have the get up and go to do so. I’m praying for you.

  21. Was this after just one infusion or did you get multiple?

  22. I had an iron infusion a couple of years ago and felt the benefits 3 months later with so much energy. I’ve been taking tablets since but with not much success as my iron keeps dropping. I’m having another infusion tomorrow which I’m really happy about. Good to hear about your success with the infusion.


  24. I just had my own iron infusion a few days ago and am still not feeling all that well so I came online to read some others’ stories. They’re mostly horror stories, so I am thankful to have come across your success story! Thank you for sharing! I hope your infusion(s) have held for the long term. Hopefully I’ll see full benefits from mine in a few weeks or so. Thanks again!

    • It took a while but once I felt more normal I stayed that way for several years. Had another infusion when I started feeling weak and had chest pains and headache and such. My ferritin level is what I keep an eye on. I am doing fine from that end. I have crazy a fib issues due to a wacky electrical problem in my heart but that is separate and thank heavens the infusion takes the iron problem off the table. Good luck. Let me know how it goes. Patience isn’t easy when you want to feel better. It really took me more than a month to feel the effects.

      • Keep digging Lisa regarding the atrial fib! I, too, have atrial fib. and low ferritin levels that I keep under control with infusions and supplemental iron. It was actually your original article that encouraged me to try the infusions! My electrophysiologist also told me that I had “wacky electrical issues” with my heart and so I tried the cardiac ablation to no avail. There are several things that can contribute to atrial fib….everything from microbial imbalances to electrolyte imbalances, etc. For myself, we have discovered that my low iron state, and other probable nutrient deficiencies, allowed my body to succumb to various issues. For my atrial fib., it is triggered by a dysfunctional vocal cord. I have had the greatest improvement in my health after resolving nutrient deficiencies and physical and speech therapy. I highly recommend physical therapy because things that seem unrelated, can often be remedied by a knowledgeable physical and/or speech therapist. My physical therapist is keenly aware of how musculoskeletal issues can contribute to atrial fib, asthma, dizziness, weakness, etc. Rest, water, nutrition, stretching and proper movement are the things we know but often get too busy to pay attention to. Keep digging ladies!! 🙂

        • I’d love to take you in my pocket to see my EP. I’m so frustrated right now because he didn’t have all my records from an event in 2017 which showed I have fib/flutter and SVT. Apparently he SVT changes the procedure. Not a simple ablation. If he had done an ablation it would t have covered all the issues. Lack of communication and records being incorrect or incomplete on computer is a HUGE deal for me right now. I ordered all my recipe and found so many errors. Says I have high blood pressure when it’s always been ridiculously low. And more mistakes I won’t bore you with. Arrrgggg! When I told my regular heart doc about those old records she said she will make him aware and see how he rethinks recommendation to have ablation. I haven’t heard back. I feel good except tired sometimes so it’s tempting not to have it done.

  25. Hello, we’re your neurological issues due to low ferritin? If so, what were your symptoms?

    • I was often faint and weak, lack of strength in my legs and arms. Could barely walk much less go up any steps when my level was 3. At Mayo Clinic it was 3 and they wanted it to be 100. It was awful. I thought the worst of course. I also fainted immediately on a tilt table test. They did that test in Charlotte and at Mayo. How are things with you.

  26. Thank you for sharing! May I ask a few Qs?

    1. Did you feel any immediate relief?
    2. How long did your numbers hold at a desirable level?
    3. Did you undergo any additional infusions?
    4. And when trying to determine the cause, did you ever undergo an endoscopy or colonoscopy?

    (I just had my first iron infusion today!)

    – T

    • I did. It feel immediate relief. It took six weeks or more. I have had another infusion which is still holding. The first lasted about three years. They shot upstairs from a ferritin level in single digits to around 500 and gradually went down to hang around 100+ for a good while. Even at that another was ordered as I do better around three hundred. Sounds high but it works for me best. I’ve had all kinds of tests. Colonoscopy for sure and upper endoscopy found I have follicular lymphoma. That was found looking at damage level from reflux and potential hernia. Found in 2013 and I have been on watch and wait since then. I had upper an endoscopy every six months for a few years and now I have one every year. It has shrunk from five patches to one. I’m about to have another upper next month. It may have something to do with anemia but nobody really knows the cause. I also have bloodwork every three months through oncologist. So far so good. I hope the infusion helps you. Let me know

  27. Did you have heavy periods fibroids?

  28. Thank you so much for posting your story. You helped me so much. I have felt so sick for the past 10 years. In April 2020 blood work done by a nurse practitioner found that my ferritin level was at 12, even though my other iron levels were low/normal. After taking supplements for 2 months my ferritin level only went up to 14, and even though I wasn’t anemic, only iron deficient, I decided to go forward with an iron infusion. Best decision ever! I started feeling a lot better after a month or so. I then had a hysterectomy in October 2020 to address extreme monthly bleeding. I have found a great iron supplement in a patch form to use and when I had my blood work done last week my ferritin level was 151! I feel amazing. I have my energy and health back. I am looking forward to exercising in the coming year and getting my strength back too. Thank you.

  29. Thank you so much. I’ve been wondering how much of this is my head … reading your post normalized a lot for me and encourages patience while I wait for the iron infusion to work it’s way through my system. I’m learning to pace myself and to be more self-compassionate.

  30. Why did it take hours? My tests before were at a nine. Above you but not by much. My iron infusion was 45 min the first time then two weeks later 45 min again.

    • They did it very slowly but all in one sitting. That’s the best answer I know to give. I could have done it in two sessions but this was better for my schedule.

  31. “Just wait about three months and you’ll feel like jumping fences”….was my saving grace. I’m two iron infusions, two B12 shots and countless rolling veins in and am still exhausted. My ferritin level was 8. I was losing hope until reading this. Blessings to you for sharing this. Glad you feel better.

    • I hope you feel better soon. It’s so frustrating. When did you have the two infusions?

    • I really hope things work out for you. I’m not sure if my comment to you went through or not but my question is when did you have the two iron infusions? I sure hope things improve very soon. It took a while for me. Eventually I started having tachycardia and a fib and a flutter and finally gave in and had a cardiac ablation. It took me about five or six months to get over that and start feeling good again but that has helped. I don’t know if you have any issues with your heart rate but mine would go up and get stuck and I had to have my heart restarted a couple times. That was not much fun. Just another thing.

  32. Hi, I know this was a long time ago but can I ask how long it took you to feel better after the infusion? I had an infusion a month ago and am still feeling weak and dizzy most days. I am beginning to think that the iron hasn’t worked but in your blog You mentioned feeling better after 3 months so do you think I just need to wait longer? X

    • I wish I had a good answer for you but I can only say it took me a while. I remember feeling like you and wondering if it was worth it and eventually I did feel much better. My ferritin levels were so low and then they jumped really high and eventually leveled off to a more normal level and that might’ve been why I finally started feeling better

      • Yes my ferritin has gone quite high and my haemoglobin is back to a normal level. Maybe I need to give it more time! I’m glad I found your post. It’s hard to find information on how long it will take to feel better! I suppose it different with each individual. But you’ve given me some hope that it may still work for me! X

  33. Thank you so much for taking the time to share

  34. Thank you for this post. I found it after searching online for an answer of when I will feel better after iron IV. I had mine this morning (5 hours) and I am so tired. I’m realizing now it is probably from the Allergy test and steroids I was given first. My ferritin has been 5 so I’m looking forward to that jumping over the fences result. I have a good friend who also benefits from these infusions and wanted to let you know I appreciate your positive experience and post. Even if it is 8 years later.

    • It’s so nice to hear from you. Thank you for the kind words. I hope you have wonderful results. I didn’t say this but since that time I thought I might need another infusion. Bloodwork showed a B-12 deficiency. Significant. I had shots daily at first then moved to weekly and then monthly. So that’s just another thing to look at perhaps. I credit both those things for my current energy level. Good luck. Let me know how it goes. Patience is key. It can take a while.

    • Also Benedryl with the infusion can really zap you.

  35. What a powerful post, Lisa! Years later you are still encouraging people with your positive experience. I’m one of those. Reading about your struggles and subsequent relief via iv iron greatly influenced my decision to get the infusion last week. I did incredibly well– just felt hungover with minor pains for a few days. I’m not yet reaping the benefits, but your story and the comments here are allowing me to be in a place of rest while suspending my expectations. I’ve been thinking about progress in these terms: anemia was a gradual process that occurred over time for me and it will take time to build back up again. I’m so happy for the results you received and the longevity you’re getting from the two treatments you had. Thank you so much for sharing!

    • Well you have certainly started my day off right. I’m delighted to hear that anything I might have experienced has been encouraging to you and others. I will say further that I am now singing the praises of B12 as well. After learning of my B12 deficiency a
      couple of years ago, my doctor had me get shots nearly every day for about 2 weeks and then once a week for a while and then every other week for a while and now I take them once a month. My husband gives me these shots and there’s nothing to it. I do think that these shots also help me live my best life. I also give these shots to my 93-year-old mother once a week and they have totally changed her energy level and many other things. Like shortness of breath and being able to get up and down better. Thanks so much for contacting me. I hope you are fit as a fiddle really soon.

    • …”be in a place of rest while suspending my expectations. I’ve been thinking about progress in these terms: anemia was a gradual process that occurred over time for me and it will take time to build back up again.”
      Whew honey! The peace that this statement has provided me. With teary eyes, I thank you.

  36. I just found this post. My 20 year old daughter is having an iron infusion tomorrow. A couple weeks ago she was diagnosed with IBS. She has lost about 25-30 pounds in the last three months from not eating due to stomach pains after eating. She did a colonoscopy, endoscopy, and ct scan that were all normal. She has had some improvement from increasing fiber the last few weeks, but still not eating normally or feeling that great.

    She is anemic, but can no longer take the oral pills because of her IBS.

    I have been googling and reading really terrible things that might happen tomorrow or maybe shortly after. My anxiety is through the roof.

    So, thank you for posting your experience. I am very grateful that you did this. It gave me some hope and now maybe I can sleep without thinking of all the bad possibilities.

    • Christine, I’m so sorry to hear that your daughter‘s going through all of this I too have IBS as do two of my daughters. One of them was told to eat fiber for years and years after not being able to diagnose her problems. Oodles of tests just like y’all are experiencing. An upper endoscopy finally showed that she had celiac disease. Unfortunately all the fiber that she’d been taking was making matters worse. She was 21 when she was finally diagnosed and is 31 now. Her life changed drastically for the better once she left gluten out of her life. Going through all that I surely feel your pain. It’s so hard to watch your child hurting no matter what their age. I’m glad the fiber is working for her. I surely hope the infusion helps. Please let me know how she progresses.

  37. Thank you so much for sharing your story ~ I have been suffering from anemia for a very long time and have been fearful of getting iron infusions. Your story has given me the confidence to finally get the help I need.

    • Hey Christy. Thanks for letting me know that the post was helpful. I canceled my appointment the first time out of fear as well. I don’t know when I will have another but the two that I’ve had over the years have held up very well. I will not hesitate when the doctor says it’s time. Let me know how it goes.

  38. I just read Christy’s post and I wanted to give an update on my daughter from 3/22. It is the post above Christy’s. My daughter had the iron infusions and they really helped. She did not have any problems tolerating them. Her iron has been in the normal range since 6/22. She does still take an iron slow release supplement daily. She still has IBS and has issues with her digestion etc, but is able to tolerate the iron supplement. I hope the iron infusion helps you!!

  39. Thank you so much for your post and for all the comments. They have really helped me feel less alone, and given me a much better idea of how long it will take for the IV iron to work. I just had my infusion 2 days ago and I’ve felt like crap, but after reading all of this I realize that I have to wait to see if it’s effective for me.
    I’ve been ill for 7 years– shortness of breath, low grade fevers, weakness, difficulty sleeping, feeling foggy mentally, and having tachycardia. My doctor checked everything with no result and I gave up after 3 years. It got worse about 10 months ago, and I had labs done that showed a high white count. It also showed that my hemoglobin and hematocrit were (as always) normal, but my ferritin was 5. Further labs showed that I have very early stage lymphoma. Treatment with oral iron only brought it to 9 after 4 months, and my oncologist ordered the IV iron since I’m not metabolizing the oral iron.
    I had no idea that I could have an iron deficiency without anemia. I’m almost scared to hope that the IV works for me– it’s been so long and it has affected every part of my life. I’ve read every medical article I could find about this, but what I needed was to hear your story and read these posts– to hear that other’s have felt like I do and have recovered. Thank you all.

    • I too have lymphoma. Mine is gastric and I didn’t absorb oral iron. I found that out well after my first j fusion. Follicular Lymphoma is the type. Please let me know how you progress. I sure hope it helps. Lisa

      • I can’t help wondering if there are links between the ID and the lymphoma, or to irritable bowel (which I’ve had since childhood). My lymphoma is indolent B-cell like yours– Waldenstrom’s Macroglobulinemia (lymphoplasmacytic lymphoma). Its associated with a genetic defect and my only sib has it too. I’m grateful for the ID because otherwise I would have found it much later.

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