r/Anemic

33F, I don't menstruate thanks to skipping the placebo week of my birth control pills.

Had COVID (probably, maybe the flu, didn't test) early April. Felt absolutely dog-tired afterward for a week, which is normal for me, but then it lasted for another two weeks, which isn't normal for me. Even stuff like two flights of stairs has left me wiped out the next day, it's been crazy.

Went to the doctor after week four of extra-super-fatigue, and she heard a heart murmur. Blood work showed ferritin 39 which isn't that crazy, but TIBC was 545. After a CT and echocardiogram, nothing was wrong with my heart itself except the murmur.

Doc said she's seen several patients this spring with low ferritin and a heart murmur after having had COVID. She also mentioned she has hemochromatosis and she had a low iron reading after this spring's COVID, which is nuts.

So anyway, PSA, turns out COVID can wipe your iron, and low iron can also independently cause a benign heart murmur. TIL. My heartburn PPI makes oral pill absorption a pain in the ass to deal with, so hopefully insurance will cover an infusion and I can get some energy back soon.

Hi, I had Ferrinject yesterday to treat my low ferritin, low haemoglobin, low RBC. Bc I’m an aerial athlete and I have a comp coming up in about 10 weeks I figured it was smart and best practice to have this treated. But I was meant to get monofer and instead somehow ended up getting ferrinject (the nurse who administered it preferred ferrinject and at the time I didn’t realise there was a difference in brands 🤦🏻‍♀️).

Now I’m freaking myself out reading all the horror stories about ferrinject, especially with my comp coming up. I feel like I have tried to do something good for my health and sabotaged myself even more!

Worth noting I actually don’t really feel any different as yet (36 hours post infusion). Doing all the right things, eating high phosphorous foods etc.

I guess I just want reassurance that this isn’t necessarily going to end badly 😔 did it work for
You? I feel like there’s only negative stories about it online.

Hi all. Just looking for some advice, especially if you’re in the UK.

Essentially, I had asymptomatic anaemia from inflammatory bowel disease for around two years, and got an infusion that boosted everything a few years ago. Now everything has dropped again and I unfortunately have symptoms this time round (think it’s because my body got used to iron and is now angry that there’s none left lol), to the point that they’re a real pain and are massively limiting my life. After 3 successive blood tests showed iron deficiency, my GP referred me for an infusion (active disease means that I can’t absorb oral iron). My hospital has arranged this infusion for the end of June, even though my GP rang them three times to try to get it moved as soon as possible.

My life is so much worse than it used to be and I feel absolutely vile. My vision is too bad for me to even read or go for a run without feeling dizzy. I’m getting all these weird cravings, and I can’t walk and talk without feeling like I’m about to suffocate. I’m in a position where I don’t have to work and don‘t have too many responsibilities at the moment, which is great, but I’m about to restart full-time education again and I’m really worried about going into it with all of this still not sorted.

I’m thinking about maybe just saying sod it and paying for an infusion at a private clinic or hospital. Has anyone had any luck with this before? Do I go see a haemotologist, a GP, a gastroenterologist?? I have functional iron deficiency if that changes anything, so my haemoglobin is low-normal. I honestly have no clue what to do, I just want my life back. Would love to hear other people’s success stories if they have any. :)

Hello! I JUST had my first infusion after being low iron for more than 7 yrs. I’m so fucking annoyed right now as I got my period more than one week early!

I’m researching and reading “yep it can affect your hormones” but am so curious about an instant period. Does anyone know why this would happen? And wouldn’t it happen after a few days, not like 16 hours later? Should I anticipate a period after every infusion? I am typically extremely regular.

I got an INFED iron infusion Tuesday with a ferritin level 7. Today is Thursday and I’m feeling like a brand new woman. I could cry tears of joy, but I can’t because I physically am too happy to cry. Here’s a quick run down of some amazing things that happened to me after the infusion.

• Immediately as the infusion started, the top of my head/scalp stopped being sore. It was always sore before.
• An hour into the infusion I felt warm internally. Not hot, not a fever, but like someone gave me the best hug. I started to doze off from feeling so comfortable.
• After the infusion I felt a headache for a few hours but it subsided.
• I was sleepy but couldn’t sleep, I was alert and very chatty. My parents didn’t seem to mind lol
• The next morning, I woke up to pee. My body wasn’t cold inside nor did my joints hurt. I didn’t have to breathe heavy or wait for my blood to get to my head before standing up.
• My body odor smelled different in a good way. My body fluids also smelled more like I remember years ago.
• The next day at work I was SHARP. No stumbling over my words, no yawning while people were talking. I could easily remember what someone said 2 minutes ago and thread it back into the conversation.
• My sex drive returned and I made a dirty joke with a guy by accident for the first time in years! The morning after, I had an orgasm in my sleep.
• My inner monologue quieted down a lot.
• I also had dreams.
• My night sweats went away.

Just wanted to share this for anyone who is considering an infusion but might be afraid to do it. I had INFED (the scary one everyone hates) but I had no issues with it. If someone told me I’d have to get iron every month for the rest of my life to feel like this, I would do it. With or without insurance, I would do it every time.

Will I end up overloaded?

Hello people...back in February I received an infusion of 1000 mg of Ferric Carboxymaltose and my ferritin rose to 55 after 8 weeks. Hemoglobin rose to 13.9.

Tomorrow I've been notified I can have my second lot of 1000 mg of Ferric Carboxymaltose. My doctor didn't seem to know what he was doing and now I'm concerned a second amount of 1000 mg will be too much? ( back in 2024 I only received 500 mg on my 2nd infusion )

Has anyone else worried themselves like this with a 2nd infusion?

Tia for any help 😊😊

I’ve tried iron bisglycinate, liquid iron, and heme iron. They all cause constipation that doesn’t go away with miralax, psyllium husk, docusate sodium, or magnesium citrate. I can’t afford an infusion. Help lol

I'm 40 years old and I've had extremely low iron for decades, pretty much as long as I can remember. My doctor has always recommended the usual treatment of iron supplements, but I didn't have the discipline to take them regularly and the constipation was super uncomfortable.

I think I haven't taken the risks of anemia seriously because I have felt "fine" my whole life. But I wonder how different I might feel if I get my levels up to healthy levels. I don't know what I don't know, y'know?

I'd love to hear from folks here who've been anemic all their life, never known a "before" baseline, and then had infusions or regular supplementation to get their levels up to a healthy level. Was it mindblowing? Did you feel significantly different? Were there things you felt/did before that you didn't realize were unhealthy, difficult, or abnormal that dissipated after your iron came up?

I recently switched to a new doctor after mine retired and she is taking my anemia more seriously. For the first time in my life, iron infusions have been suggested. I'm actually considering it now to see if this more immediate boost in iron will give me some eye-opening experience to life on the other side, which will in turn motivate me to majorly increase fibre intake and try taking Feramax regularly again.

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Hi!

Just saw results of my blood work;

Ferritine 3.16

Hemoglobin 5.3

I'm not that worried; guess my gp will call me somewhere today or tomorrow, but since reading a bit on this thread I'm wondering if I should be worried?

Had it tested because my heart is acting up lately...

And just wondering, how long does it take to get this low?

Thnx!

Hi all. I’ll try to make this short. I got an iron infusion 8 months ago and it’s made my life a living hell. I’m not saying that to discourage anyone, because I’m pretty sure it’s other factors playing into it, but I just want to get others opinions because my doctors are stumped. Iron infusions have never done me wrong prior to this and have been a great help with my anemia. I think I’m a rare case here. I’ve had iron infusions in the past because I deal with chronic anemia. All of them went fine up until this one. Between this one, and the one I got before that two years prior, I developed histamine issues I thought was just from hormonal fluctuations since it was slowly calming down before this.

After my infusion, everything’s gone downhill. The first few months, a trip to Walmart, walking around for maybe an hour and a half to grocery shop, felt like I did the most intense core workout. It would take days to get over it. To preface, before this, I walked universal studios from open to close and the only thing that was sore was my feet. My histamine issues came back full force, and so did my hormonal issues. The soreness lasted months, and has only recently gotten better, but I am still nowhere close to where I was. I get overexerted so easily and I get muscle aches frequently, along with cramps when I never had any issues previously. If I even sleep with my leg extended I wake up with deep soreness.

Another thing is inflammation. I have so many issues with inflammation now. Tmj being exacerbated, I’ve gained unexplained weight despite not doing anything different in my diet or routine, I’m constantly swollen looking. If I get any sort of inflammation, I overreact. For example, I had ONE folliculitis bump at random. No sign of infection. No redness, no visible swelling or discharge. Yet my whole upper arm where it is sore to move and my lymph node is swollen and sore. If I even hurt a muscle under my skin doing something, the area above it gets red and hot for a while.

I’m stumped. My hematologist doesn’t acknowledge anything I say despite all of this starting directly after my infusion with no other triggers. My allergist doesn’t know what to tell me besides for the actual histamine issues like my hives or dermatographia. My PCP doesn’t know what to look for. I’ve done tests for autoimmune issues before but everything came back fine (prior to the infusion). I’m just wondering has anything similar happened to anyone after an infusion? Surely it has to have some underlying cause, or exacerbated something in my system, because I’ve never had anything issues like this before, or at least not to this extent. Thank you for taking the time to read if you made it this far.

Yes, I have anxiety, I used to have real panic attacks before, but I fucking swear, I did not have a panic attack in the mental sense today.

I am extremely tired all the time, I walk a little bit and I feel like I ran, and I am out of breath. My ferritin level is 9, I got the blood results a few days ago. Often I cannot even move my arms properly as they feel super heavy and weak and I've been struggling with these symptoms for months.

I was having a cozy day today, came home after work and watched tv with my boyfriend. I was again, exhausted physically, but I felt great psychologically. I started to breath like there is not enough air in the room, just like after running. I felt so weak that I could not speak back to my partner nor move too much.

Of course, my boyfriend got worried and drove me to emergency. I felt so terrible physically and was hoping I will get an infusion, as I assume this is all due to my ferritin being so low and that I finally have explanation for all my symptoms I've been experiencing for so long.

They checked my heart, and it was beating fast, but I swear I was chill and calm with no worry in my mind. Even the extreme tiredness I am kinda used to. I just wanted an infusion to get the energy back and to stop the pain in my feet and hands.

I don't even want to go in details what and how they told me that I just have a panic attack. When I told her that when I walk I am tired just like I was running and could my weakness and breathing stronger be ferritin related? She just continued with the slow smiles, which just told me she is trying to look and be "calming" and I could care less because I am not under actual panic.

She took my blood, and said she will come back in 5 min to update me about hemoglobin. She said your blood is ok, and it was a panic attack.

AM I CRAZY?? Yes, today I was grasping for air, and I STILL, even hours later feel like I have to breath deep to be functional. I was not hyperventilating in the classic way, but in a VERY TIRED way.

Could it be that my body is not getting enough oxygen with low feritin and normal hemoglobin? She did not tell me the number so who knows what's my hemoglobin level.

I mean, myb it is not smth to go to emergency for, but I would do the same if I saw my boyfriend lying with open mouth and strugling with moving.

I am hoping for a bit of maybe advice or to hear from someone who has experienced this. I have had anemia for over 2 years at least, I have taken the oral iron tablets and got up to the bottom of the normal range and then got taken off them. A month later my follow up tests showed I am anaemic again so I needed to go back on the tablets. This happens again and again. I put a post up and got some advice about iron iv. I am in the UK so had stuck to the NHS but I do have private health insurance through my work so decided to use that to ask about the iron iv. I met with a hematologist whose area of expertise is anemia, my GP emailed over all the relevant info and medical issues. I asked to get an iron iv and he told me I could get it but after reviewing my file he believed it would work for a maximum of 3 months for me. His recommendations are I get put on the urgent list for a hysterectomy on the NHS or see if my insurance covers it. In the mean time I have to stay on the iron tablets, I have very heavy periods and fibroids and he believes that I am losing too much blood each month and my body is struggling to repair itself. I have had blood clots in my lungs so they have ruled out other options to try and control my periods. I have the only child I am having but it seems such a large operation to have. Though I am fed up with the exhaustion, hair falling out, breathlessness etc. Currently my mum says I make ghosts look tanned I am so pale. Still, its a massive operation, anyone had this and did it work?

Not sure what other results you need answers for. What I can see that might help is my iron is 29, saturation is 6.97%, and my MCHC is 30.5. Ferritin is 21. Hgb 12.9.

My primary care doctor had his medical assistant call me and say all of my lab work is fine. I was also very low on vitamin D (25) and had a couple other things slightly off because I was fighting a virus. My oncologist (I have a history of breast cancer and happened to have a check up with her the following week) right away said I need iron infusions.

I struggle every day with crashing mid day. Zero energy. Palpitations. All of which I have always assumed was hormones?

Why such a difference in my doctor’s responses? And is this considered anemic?

Hey guys, this is my first post here so I’m hoping this isn’t a repetitive post. I got labs done in November and they didn’t say there was anything to be concerned about and that all my levels were normal… However, I just got home from physical therapy and we were trying to solve the mystery of why I am so exhausted every single day, turns out my ferritin is an 8.3. My iron levels are totally fine though. She seemed pretty concerned about how low my ferritin was, she definitely wants me to see my primary care doctor asap and get more labs done. Is this cause for concern? If so, why was I never told that I had “dangerously low” levels? I’m just confused, what should I do?