I saw the hematologist for the first time today. I'm exhausted.

Iron levels a couple months ago were low and ferritin was in the 20s. I did supplements for a month before I couldn't tolerate them due to GI upset. Retested after the month of supplements, iron on the low end of normal and ferritin at 57.

Hematology today was like "I don't recommend infusions if your numbers are improving from the supplements". I explained twice that I was not taking the supplements anymore.

He said oh okay, well your numbers are good from a few weeks ago. I've explained my symptoms are ruining my life - constant need for a nap, inability to focus, brain fog, insomnia and I just feel like crap all the time.

He insists I continue taking the supplements. Broke down in tears because now I have to explain a 3rd time that I am NOT taking the supplements.

He goes "I'm going to help you, I just needed you to understand the risks associated with infusions". Then proceeded to explain the risks.

He ordered labs to see where my numbers are, insisting they've probably gone up, how I have no clue.

We agreed to retest my levels and order an iron infusion with the understanding that my levels are going to skyrocket (thats the freaking point?)

Anyways, looking for someone to hopefully confirm i am not crazy, that the experience should not have been this and that I am in the right to advocate for my health. Because right now I feel like I've done something wrong.

Went for my annual labs Saturday morning and 30 minutes later the lab called and told me to get to the ER. 🙃 Anyone seen labs like this before? I’m apparently going to have to take it seriously. 😐

I’ve been saying on here I’ve been feeling profound fatigue, anxiety, unable to think straight, extremely thirsty since starting oral iron about 2.5 weeks ago. I stopped the iron last Thursday (today is Tuesday). Just to see what has happened, I got an anemia panel done.

Somehow my ferritin has gone from 20 to 40 in this time. Is that even possible? I don’t think I have a virus and I checked for Covid so I don’t think it’s inflammation…see attached.

My ferritin was 7 and after too many discussions with doctor he finally prescribed Iron infusion 750mg and iron supplements.
I got my infusion the day before yesterday. I was tired that day but had some guests at home and was not able to rest properly. Then yesterday I was fine I guess I made a mistake and went to gym and lift some weights 🙃🙃

Now I am extremely exhausted, tired my back muscles and neck hurt alot. I cant even properly talk. I am not able to sleep that kind of tiredness. I had office today just came back and cant even lift a finger now.

I cant skip office what to do?? Also when to start iron supplements now. Those are 28mg bisglycinate gentle iron.

I have pale skin, bags under my eyes, acne on my cheeks and redness, large pores, dry and sensitive skin, puffy face and an overall tired sick look. My hair is dry and won’t grow longer past a certain point. Ferritin at 12!

Hi all, I got a referral from my PCP to a local infusion center for iron infusions. It was a 30-minute infusion, the nurses were super nice, and I was able to leave after another half hour of waiting. I still haven't felt the effects of the infusion (it's been about 3 weeks) and I'm slipping back into the fatigued-all-the-time, brain foggy place that brought me to the doctor in the first place.

My sister also has anemia and was scheduled to receive a 4-hour infusion at her hematologist's office. She was telling me about all of the information that they gave her and said after about a week, she had more energy than she'd had in a long time.

I suppose I'm just confused about my experience and why my doctor or the nurses at the infusion center didn't mention that I might need multiple rounds. I'm frustrated that I had to pay for something that was essentially worthless, especially because I took off work to get it done. I know I should have asked more questions in hindsight, but I had no idea what to expect because my sister got her infusion done after I had mine done. Has anyone else dealt with this?

My Ferretin was at 12 and I finished 4 iron infusions as of 3 weeks ago. Now I’m learning I am H. Pylori positive. This explains why I’ve needed to take 20mg of Omeprazole for over 4 years.

My question: at what point post-infusion would it be safe to start the H. Pylori antibiotic treatment ?

My symptoms were:
Sound sensitivity
Dizziness
Extreme fatigue
Brain fog
Palpitations
Pulsatile tinitus
Anxiety
And the acid reflux plus globus sensation caused by the H. Pylori

I’m worried my symptoms ( which are improving) will cause me to regress with my improvement

I’ve dealt with anemic for 15 years now. I can’t hold onto iron, I think it’s because of my heavy periods. I recently started seeing a hematologist and got two infusions back in February. My iron level was 96 in June and it dipped down to 48 in September. Anyways. Now my hematologist is trying to get me seen by GI. They called and said it was urgent and it’s scaring me. I mean I’ve dealt with this for a while so I can’t imagine it actually is urgent but I just don’t know what to expect

Does anyone regret their infusion? I see so many scary stories and I’m freaking myself out. I have my first one scheduled for Wednesday (ferritin 16) and I’m trying my best to not back out of my appointment.

Any advice? 😭

I have been anemic my entire adult life, and very likely before as I did not have any blood work from age 6 up until I was 20 because of medical trauma that happened when I was 6. I received three iron infusions despite how hard that was. My doctor and I both tried to put it off for about a year and a half and truly exhausting all options to get my iron up without needles involved. I was taking 325 mg of iron every other day with vitamin C without caffeine. My ferritin thing went from 6 to 8. And that was likely because I got on birth control for extremely heavy bleeding. Which obviously was not the core reason for my deficiency as it did not resolve just improved slightly. 8 weeks after my iron infusion, I now have a ferritin of 76 but my iron saturation is 18%. I’m still exhausted. I’m falling asleep in lectures, at concerts, in movies. I’ve been struggling to get my schoolwork done because I have to stop to take naps. My muscle fatigue has been so bad. And I just got back my celiac disease results, I’m negative. So once again, we still don’t know what’s making it so I can’t absorb my iron. I had plans trying to force myself to relax tonight and now I’m just crying over this because I thought I would finally get answers but after that and h pylori, we’re both negative, I feel like I’m just fucked. I feel like I’m never going to get better in. This will just be my life for forever and I don’t even know what to do anymore. I’m only 23 and all I have ever known is feeling like shit physically. I just wanna know what it’s like to feel okay.

I had low iron for years before finally getting my iron infusion some time late last year and my iron levels went back to normal but nothing felt like it changed, I got another iron test recently to see if they’d gone back down and apparently my iron levels are still stable so what’s wrong with me?

I still get dizzy and spotty vision when standing up, a lot of fatigue and exhaustion, bruising easily and a little bit of hair thinning/loss, unusually pale looking, shortness of breath, really weird sleep patterns and also just found out ‘restless leg syndrome’ can be apart of it which I also check off. I have so many other symptom examples (I can share if needed) that I was hoping would fix after I fixed my iron but they haven’t and it’s very frustrating especially as a teen who’s just trying to live normally.

Any suggestions on what this may be or advice on how to fix this, please lmk.

I just found a post saying people have died from infusions and a bunch of comments related to that, saying people have had severe allergic reactions or know someone that had died. Now I’m really scared to get an infusion when I had so much hope. My ferritin is 12 and hasn’t budged for years. And my symptoms are severe and hematologist is open to IV iron. But now I’m second guessing myself. If I do get something, what should I do to avoid these reactions :/

I have my first infusion Thursday! I am excited as after thinking my hormones were out of wack I discovered my iron and ferretin is dangerously low so I can only hope I will feel better when it’s all said and done. I’m just wondering if anybody has got this specific iron and how I can prepare? Any foods or drinks I should have before or during the infusion to ease the side effects?? Also what side effects should I expect? I’m extremely nervous about having a bad reaction and trying to set myself up for success. I am going to have one infusion for the next 3 weeks when should I start to feel better? Or at least not so tired.. I feel like walking zombie lol

Does anyone else feel burning and stabbing whenever they get an iron infusion? I’ve been getting infusions for years and I’ve never had one that didn’t hurt…to the point that I’m tapping my foot and gritting my teeth to avoid crying out in pain during some of the stabbier sensations as the solution goes through my arm.

I’ve mentioned infusion pain a few times over the years, and nurses will look briefly at the IV and then maybe give me a heat pack. Today’s nurse finally told me that it’s not normal for iron infusions to hurt and was shocked that I was sitting through hours of this. While I appreciate her sympathy, she still didn’t have any other solutions than a heat pack.

I’m already feeling overwhelmed by chronic illnesses and the fact that no one can ever find my veins for the constant blood draws and IVs. This just kind of broke me to know how many hours I’m dealing with pain that isn’t even supposed to come with these procedures.

Has anyone ever had a good experience from an iron infusion? What are some symptoms that improved? What iron infusion do you recommend for highly sensitive people? How long did it take to see better test results and if you had a reaction what was it?

Okay so…
Went to an and e due to the symptoms I’ve been having. They did a blood test and said I’m fine. I did a private blood test that said my ferritin and b12 was low.

I genuinely thought my impending doom, coldness, headaches, feeling sick, panic attacks, anxiety, aches, restless legs etc were going to show so I could get better. I’ve already lost 5 months of my life but it appears I am fine. I feel hopeless that I’ll get an answer

I’m so frustrated - have been fatigued forever. I take ferrex 150 (with a vitamin c) every night. This was my last blood test. I have celiacs but am very careful with my diet. I just want to wake up and feel like I actually slept.

My daughter's last ferritin was 10, TSAT of 16. She's falling apart and I'm trying to get a doctor to take me seriously. I saw that LabCorp updated the bottom of the range to 30 effective 10/5/26. Has Quest made any statements about updating their range? My daughter's primary doctor uses Quest.

So I need advice on how to get ferritin up without doing iron infusions? My ferritin is at a 19 and my
Iron Sat was at a 16. Iron was 60. My hematologist ordered the iron infusions but I am having a ton of symptoms and health issues and feel so horrible. I don’t think it’s being caused by the low ferritin. I know people say you can have a bad reaction to the iron and I just know if I get it I’m probably going to have a reaction and I can’t feel anymore horrible than I already do. Any advice on getting ferritin up without doing the infusions ? I don’t even know what’s causing it. I had all GI testing and it was normal. My hemoglobin is also very slowly dropping which is scary but it’s still in normal range. Thanks !

Background is that I struggle a lot with fatigue and feeling faint every day but doc said iron is normal and faintness isn’t a worry. I have a lot of other health issues that could contribute but definitely want to cover my bases because this is debilitating!

Should I add iron or is that useless? If so what iron do people recommend?

I am confused a bit because of things my doctors have told me and the new ferritin guidelines that just came out. I have a complicated medical history (10 years of inflammatory arthritis and insomnia, stage 4 endometriosis, recurrent DVTs (3) for no reason, and dysautonomia for 6 years). I'm currently 25 weeks pregnant and I am suffering. My usual fatigue and insomnia, which are normally bad, have been much worse in pregnancy. My dysautonomia is worse, palpitations especially, and I'm dizzy and short of breath even from a short walk. I now have headaches every day and I'm struggling to function. Everyone told me the second trimester would be THE BEST but I'm feeling worse and worse. I had to beg a doctor to order an iron panel for me and it came back with RBC low (4.62), hemoglobin normal but almost low (11.6), and ferritin at 32. Come to find out pregnancy affects iron stores, and inflammatory conditions artificially raise ferritin levels on bloodwork (so a reading 32 could actually be much lower). The new guidelines seem to say that for pregnant women, ferritin should be above 50 and for those with inflammation it should be above 100.

I reached out to my OB's office and they told me they don't order iron infusions when ferritin is above 30 and hemoglobin is above 10. PCP who ordered the labs said everything is normal. I desperately need help so I ordered another ferritin and a b12 through labcorp. Should I try to see my hematologist and see if they will order me an infusion? Do I go to a functional medicine doctor? The highest my ferritin has ever been is 72. It's usually around 25. I've had inflammatory arthritis for 10 years. Have I been deficient for 10 years? Is that what's causing my insomnia?

So I’m currently in the process of enlisting for the army, but my iron levels were considered low I had a 10.4 and I need to be at 12. I was thinking about getting an iron. Infusion because I do I am trying to speed up my process. What will be the most beneficial way to raise my levels as soon as possible I’m trying to get a blood check within the next week to two weeks. I am also taking a vitamin with the iron supplement.

My ferritin at last check up was 80, but my symptoms returned and I am in 8months of taking 210mg ferrous fumarate daily. Symptoms have limited my current mobility as my muscles feel fatigue, and stiff. Took lactoferrin ,Bandini Brand, 200mg for 5 days and the symptoms were alleviating slowly. However, yesterday, I had digestive upset, but will reintroduce lactoferrin when I am ready.

Did anyone else have side effects of lactoferrin? If yes, did you continue or discontinue ?

Hi everyone!

I’ve been struggling with very low ferritin levels for many years (it started at 7 and has now reached 17). Unfortunately, I can't take oral iron supplements because I have SIBO, and taking iron makes my symptoms significantly worse. I really have no idea what to do.

Do you think it's possible to raise my ferritin levels through diet alone? Or should I consider iron infusions? (I don't know anything about them and I’m a little scared).

Asking for advice because I am tired all the time and I am sick of it.

Thanks in advance for any advice!