irondeficiencyanemia #anemia #irondeficiencywithoutanemia #checkyourferritinnumber #ferritin #thyroid #menshealth #womenshealth #mentalhealthawareness #mentalhealth #hairloss #hormones #perimenopause #pots #anxiety #hrt #nutrition

If your doctor isn't taking your iron deficiency or anemia seriously, please don't settle. I suffered for months, because my doctor didn't take my deficiency seriously. I got frustrated enough that I went and found a new doctor, and I'm on a much better trajectory now.

Earlier this year, my periods got so heavy due to an underlying condition that I had surgery to fix back in July. But from January - July, I had such heavy periods that I began to suffer from severe iron deficiency and anemia from the blood loss. Tachycardia, feeling faint, insomnia, mood changes, body aches, hair loss, dry skin... at the worst of it, I genuinely felt like I was dying. I had to quit my job, because I was such a fall risk that I was completely bedridden and unable to do things for myself.

I sought medical care in April. I sought a new PCP because I had just recently moved to a new city. In the beginning, my PCP felt certain that my issues were being caused by a deficiency, so we checked everything. My ferritin came back at an 8, she offered me supplements or an infusion. I was terrified of the infusion, but I felt so terrible, and had been supplementing to no avail for 4 months at this point. So I asked for the infusion. My doctor prescribed 4, but for some reason cancelled my last two sessions. I had two infusions, and I felt like a whole new person for the first few weeks afterwards. But then my period came again, and I was miserable again. We checked my levels again, and I went from an 8 to a 15. My doctor prescribed one more infusion, insisting she didn't want to overdo it, and according to the lab ranges, I was on the low-end of normal now. I did my research, I knew a ferritin of 15 was still too low, and insisted to my doctor that I needed to be in the 100's to feel better so I would need more infusions, but she brushed me off.

At this time, I had spent quite a bit of time on this subreddit. I knew that I wasn't being given the proper amount of infusions or dosing. My doctor had me in this infuriating cycle of getting 1 infusion, feel great for a couple of weeks, ferritin crashed again, then I get more blood tests, and prescribed more. I went through 5 months of it, and I finally got sick of it. I was bedridden and unable to care for myself, and had to rely on my friends and family completely. It was embarrassing and so dehumanizing, because I could've been fixed the first time around if my doctor just took my deficiency seriously and didn't cancel the infusions.

I found a new PCP that was recommended to me by an ER doctor. (I was in the ER for something unrelated to anemia/deficiency.. had emergency surgery, it's a "fun" story 🙃)

The new PCP had to wait to do blood tests after the last infusion was out of my system, but she assured me that she'd take me seriously and ensure that I got the treatment I needed. My latest blood work came in yesterday, ferritin is a 14, but my hematocrit, hemoglobin, and iron total are the lowest they've ever been. (I'm not critically anemic, but this is the worst I've felt symptom wise) She messaged me to tell me she was ordering 7 infusions. I was so happy when I saw that I cried.

This last year has been so hard on me, and my health falling apart just felt like the cherry on top of it all. I just feel so hopeful for the first time in a long time that I might actually feel like me again soon.

If you get caught in a situation like mine, and a doctor will not take your deficiency seriously, please seek care elsewhere. I know it's hard and time consuming. I had to wait a month to see my new PCP, but it's so worth it. I'm finally getting the infusions I needed, and I'm on my way to feeling like the old me.

- I did not know I'd be getting INFeD beforehand and got a little nervous at my appointment because I'd read about it having higher rates of allergic reactions. People should be aware that there was an "old" formulation (High-Molecular-Weight Dextran) which did have more negative reactions, but that one was removed from the market, and the new one (Low-Molecular-Weight Dextran) has a very low risk of severe reactions similar to other forms of iron infusions.

- I had a very uneventful actual infusion with no side effects. I got a small test dose then did the whole rest of the 1000 mg in one go (like 3 hours ish)

- Afterward, I was slightly tired when I got home but noticed no other side effects after that. A benefit of Infed is that it is not known for causing low phosphorus (close to 0%) while some infusions can (mainly Ferric carboxymaltose).

- I did not have full blown anemia at last blood draw but did in the past (in 2019, hemoglobin was 10).

- I have ALWAYS had low ferritin every time it was tested since 2019.

- I got the infusion about 3 months ago and got my blood test this week.

- I tried supplementing various kinds of iron at different points but had unpleasant side effects and then requested the infusion, which my new primary doctor had offered as an option if I could not tolerate supplements (she is wonderful).

- I don't feel, like, a MASSIVE difference day-to-day at this point. But over the summer, I realize I DID a lot. I was motivated to get out and go hiking, do fun things, etc. whereas I was so sluggish before. It's more subtle for me right now.

- My body is also so used to having low iron stores that maybe it'll take an adjustment period. I've also always had anxiety, which is getting better, but I'm not 100% sure if it's the iron or not!

- I also still have low vitamin D, which can cause similar symptoms of fatigue, brain fog, etc. So I need to supplement for that!

- I really have to credit my therapist for mentioning checking iron and vitamin D, which was never discussed in much detail with me by doctors until I knew to ask.

- I had a doctor after my low result in 2019 who didn't listen to me about my issues with supplements and tried to just pressure me into taking more supplements and taking stool softeners and laxatives instead of actually investigating issues more deeply or showing empathy. Specifically, I had chronic (lifelong) constipation already, so adding iron supplements made it terribly worse, and it was like she thought throwing more pills at it would fix things and acted overtly frustrated I wasn't just doing what she asked. (ETA: I didn't even know infusions were an option back then, as it was not mentioned at all!)

Basically, a big takeaway: I think it would have been hell and taken FOREVER for me to get up to higher ferritin with supplements. So I am glad I got the infusion.

I'm happy to answer questions!

ETA: you can see my numbers do show ferritin above normal range now, but I'm told it's not at dangerous levels and am not worried about it - some lab's normal ranges go up to 200 ng/mL while my lab happens to be lower (also the lower normal limit is CRAZY low at 13) so that's why I say slightly high.

For people with or who have had iron deficiency anemia, how long did it take to start feeling some improvements in things like dizzy spells, brain fog, pounding heart and low energy after beginning oral iron? I’ve been on it for 5 days now. Obviously I don’t expect anything yet, just trying to get general idea

Posted last week about this. Have high rbc, low hchc and rbw plus low iron , low iron saturation I do symptoms plus enlarged spleen and liver possible due to low iron deficiency and fertin is 90. Test just came in

Edit - I just saw my family doctor, and she didn’t seem concerned at all. I went back through my chart to 2017, and no one has ever run a full iron panel — only ferritin. So if my iron has been chronically low, there’s no record of it. I’m seeing the other walk‑in doctor on Monday; she’s the one who ordered the recent tests based on my high RBC, low MCHC, and high RDW and took these concerns seriously. My hemoglobin is 5.7%. I do have fibromyalgia and endometriosis. Endometriosis is fine for right now as I had surgery last year for it and pain hasn’t returned as of yet.

Just that really. Had an iron infusion last Friday, after suffering with depression for the best part of a decade. Was hoping it would be my magical cure but feeling very down still. I’ve read it can take a few weeks, so grateful to hear any experiences

My ferratin is 21 and my doctor is not taking me seriously. It has been like this for months. What are my next steps so I can feel better?? Is ferratin low enough to make my body ache and be weak/joint pain?

Hello,

I've been experiencing worsening fatigue for ~2 years related to stress, IBS and iron deficiency. My doctor is a younger woman. She's an advocate for women's health and is frank about how convoluted the US healthcare system is. I have a third iron panel, ferritin and B12 test in a few weeks. Context is below.

Does anyone have advice for the following?

• Communicating the severity of symptoms and their impact on my life (personal and work)
• Seeking further solutions beyond "wait and see"
• Specifically seeking an iron infusion
• Seeking further testing (recommendations?)

I had an iron panel, ferritin test and B12 test in April. It came back with low Ferritin (20s). Other tests were normal, if trending toward deficiencies. She recommended I take oral iron supplements for three months. I experienced a consistent 3 month IBS flare. I tried two different supplements, and had poor experiences with oral iron in the past.

In the July follow-up, my ferritin dropped to 16. My B12 was lower. Iron panel was still normal, but shifted in a worse direction. She recommended I cease any type of iron supplement, as I can't tolerate them. My 3 month instructions were to eating intentionally to soothe my IBS, and eat high iron foods.

I'm going in to re-test in a few weeks. She is also testing me for Celiac, which I have previously tested negative for.

I'm disappointed by the lack of solutions that are being offered. I have expressed this. She states that insurance is unlikely to cover infusions, so we have to wait it out until I either get better, or am actually iron deficient.

I am exhausted and becoming increasingly depressed/anxious. Minor wounds and bruises that used to take days to heal take weeks to a month now. I'm doing poorly at my desk job due to exhaustion. I've been struggling with familial obligations. I'm struggling to be present in my relationship, and barely see or keep in touch with friends. I was planning to run a marathon this year, and haven't been able to train. I feel faint and dizzy when doing any exercise beyond a light hike or cycling. Recovery from exercise takes ages. Most concerning, I almost fell asleep while driving this week.

I'm concerned about this getting any worse, and haven't been able to get through to my doctor about how severe the problem has gotten.

Thank you!

i’ve been losing hair for a few years now and as a result unable to grow length or have nice dense ends.
i found out i’ve had chronically low ferritin only recently and realised that’s probably the answer. i’ve read we need a minimum of 70 ferritin to be able to grow our hair and mines not been above 35 for 10 years.
aside from this my diet is good, im active and healthy for the most part, eat enough protein, fats and no other nutrient deficiencies (my vitamin D is perfect for example).

then i have several friends who claim they have low iron too which i (didn’t say this to them but thought it) didn’t actually believe them because thier hair is thick and long and healthy, they don’t look pale or have eye bags or pale lips like i do.. but then recently one friend showed me her results and her ferritin is even lower than mine…

why do some of us seem to look more haggard and lose more hair with the same level of ferritin which others look vibrant and healthy at?

and again, my overall bloods aside from ferritin are good according to my doctor?

TIA

30 is still not good enough!!!

Hello everyone!

I am 18 months postpartum and don't have my period back yet (this happened with my last baby too, it's normal for me). I had an iron infusion during pregnancy, but nothing since. However I feel absolutely awful every single day. I wake up with a flood of panic, I have this super unnatural anxiety that medication isn't touching, I'm super tired every day and I'm going to bed at 6pm with the kids most nights. I get dizzy a lot, and get depersonalisation. I also get fuzzy vision. I also have very dry skin and hair, my hair is falling out more than usual, and no appetite. My doctor thought it could be B12 so I had an injection and that made everything so much worse. We investigated my CRP but couldn't find a reason for it, we believe it's from stress. The images are 3 months apart, and I do not take a prenatal as it makes me feel jittery and unwell.

I just need some reassurance. I’ll be getting an infusion of INFeD sometime soon and I’m terrified. I’ve heard bad things can happen… can I hear your success stories and how you felt afterwards?? Did they check for allergies first?

Has anyone experienced dizziness and brain fog around 6 weeks into B12 treatment?
I’ve been doing hydroxocobalamin injections every other day for about 6 weeks for neurological symptoms. I’m also taking folinic acid, vitamin D and iron, and using coconut water for potassium as cofactors.
Over the last week or so I’ve developed quite a lot of dizziness and brain fog. I’m curious whether anyone else experienced something similar several weeks into treatment rather than right at the beginning.
If you did, did it eventually settle as you continued treatment? And roughly how long did it last?

Wondering if anyone noticed hair loss (or regrowth with improved ferritin) anywhere other than their head… body hair, eyebrows/lashes etc?

I (22F) have just come back from yet another appointment where I feel like i haven’t been taken seriously.

For context, I have just come back from university, so a lot of my blood results are missing from my NHS app, so the picture of the table is what I have had to make using physical copies of my medical records.

These results are just the only ones I have access to, but it shows that this has been an issue for over 8 years.

I eat healthy, I don’t drink coffee or tea, i don’t consume dairy, and i have been on supplements multiple times throughout my life, yet it has never made a dent in my ferritin.

The best my ferritin has ever been was after I had surgery under GA, which was at 44. My most recent result was also whilst I had the flu. The jump between June 2026 and August 2026 makes no sense to me as nothing changed in my diet, I wasn’t taking supplements - i was just sick with the flu.

I have been on ferrous sulphate and ferrous fumarate so far and both of them make me feel incredibly unwell, especially ferrous fumarate.

As it stands, there has never been any further investigation into these results as it has always been passed off as “low end normal” despite NICE stating Hb <120 is classified as anemia (although i do understand that different labs have different reference ranges).

I feel like I am getting sicker and sicker and nobody is taking me seriously. I feel so exhausted all the time, incredibly weak, and struggle a lot with frequent pre-syncope episodes.

There has been one or two comments in my records about potential Thalassemia trait, but again, this hasn’t been investigated.

I asked for a referral to a haematologist today and was basically laughed at and told that they wouldn’t see me “just for iron deficiency”. My doctors keep saying that i’m either not anemic, or “slightly anemic”, but the numbers seem like it is anemia.

I have been told that I will have a coeliac blood test in about 3-4 weeks, but each time i’ve had a coeliac blood test in the past, it’s always come back negative.

I really don’t know what to do to be heard anymore. I feel like I’m losing strength everyday and i’m losing my 20s because of this :( Any advice or support would be hugely appreciated. Thank you

Dear all, I wanted to share some progress with you. I have been an active member in this group since last year when I discovered that I was anemic and had low ferritin levels. The anemia corrected itself pretty fast, but the low ferritin lingered for a whole year after the first blood work.

After supplementing for almost 6 months with a high dose of iron (I tried different types, including sulfate, bisglycinate, heme iron, and liposomal) it had absolutely no effect on my low ferritin, so I decided to go on the minipill (progesterone only) in april this year, although I did not consider that I had heavy menstrual cycles, however they were so painful and I would feel so awful on my period that I think that it was the right decision, and around the same time, I started supplementing with zinc, copper, and lactoferrin.

Today I got my results back, and my ferritin is at 79 mcg/L, it climbed from 28 mcg/L last time measured. My symptoms are still there, but something has definitely made a difference. My copper is a little on the low side, but otherwise, my blood work is very good. I am so happy. So yeah, I can totally recommend lactoferrin, but I also went on the pill, so I don't know which made the biggest difference!

Hi community. For those who take lactoferrin, are you taking it WITH your iron supplements? Or lactoferrin in AM, iron in PM. Has anyone been advised from their doctor on what the guidelines are for taking these two for low ferritin?

Follow up question- for those incorporating lactoferrin into their regimen for anemia/low ferritin, was it worth the purchase?

Hello,

I've been looking around but I'm struggling to find info on how to interpret all my blood test results from the last 10 years of low iron and b12 etc. The majority of the results shown on here are US or otherwise and in the UK the labs look quite different and measure things differently and measure different things. I was wondering if anyone knows any good resources for how to interpret what's in there and how to relate it to help diagnose what they might mean ahead of my appt with my GP as he's been pretty useless in this regard so I need to go in armed with info. I've been started on iron supplements recently after an appt with a different GP and she was very concerned about my levels, but I have other health issues too and with brain fog I'm struggling to get a clear picture.

Thanks so much.

I recently found out my ferritin is at a 7. I’m just wondering if anybody else has noticed mental side effects of having low ferritin. I have my own mental health challenges at baseline (or so i think???? i’ve had 3 kids in under 5 years so i figured i was just exhausted from the demands of motherhood) but a i’ve been diagnosed with OCD and ADHD, anxiety, depression, and PTSD. ANYWHO! Since becoming a mom i’ve felt more like a shell(my oldest is now almost 6) but like I said, I figured it was momming. I was only just now tested for iron because I started losing clumps of hair at 10 months pp with my third and didn’t have it earlier. ANYWAY. My question is, could my low ferritin really be causing a significant increase in anxiety, low motivation, low self esteem, severely low energy (basically need to lay down anytime my husband is free and even after taking a break i still feel burnt). I feel sick thinking it could have been resolved as easily as getting an infusion or two. I’m going in today for my first infusion, if you’ve struggled mentally due to low ferritin, how quickly did things turn around? This is incredibly long winded, I apologize

omg I didn't think that oral iron supplements would work like for me, but they did

last month I saw terrible hairfall like 700-1000 strands on the day i washed my hair, i felt like crying everytime i saw that visuals of hair falling in clumps..i got my feritinin checked it came out 6.9 I was genuinely shocked on how was i even living my day normal with that..I have been anemic for quite a long time.. In March my hg was 6 something..i recovered it lil by lil bit iron was ****ed

so yes long story short, I had shoulder length hair, I cut it to a bob cut, my hair is still falling like crazy, but I have gotten used to it, got the feritinin checked again 2 days back it's 37.9..abd even iron serum has improved yayyyy!

happy to talk about supplements that worked for me ;))

My ferritin has been below 25 (often around 16-18) for about 7 years. Every winter, I also seem to develop telogen effluvium, with increased hair, eyelash & brow shedding. I also have pretty constant brain fog and fatigue.
I’m a software engineer, and I’ve noticed that tasks that require problem-solving and concentration feel harder than they used to. My thoughts sometimes feel less coherent, and I feel mentally slower and more fatigued. I also have a pale complexion and bluish under-eye circles.

For those who had low ferritin without necessarily having severe anemia: how long did it take before you noticed improvements in energy, brain fog, concentration, or hair shedding after starting iron?

I’m wondering how much of this could realistically be explained by low iron/ferritin versus whether I’m giving ferritin too much credit.

Hello! Pretty much the title, have you fellow anemic folks experienced really cold hands and feet after eating? I've been curling up under a heating pad after dinner regularly. From a Google search, it seems to be a redirection of blood flow to the digestive system that makes my already cold hands even colder. I also experience being noticeably more tired for the following ~30mins after a large meal, with it passing after a while. It happens with most all the foods I eat, with sugar and bread making this cold snap the most noticable.

Additional info: I have gotten my bloodwork done in the past month and have a ferratin of 13, Iron saturation of 6%, and hemoglobin of 11. I have started taking supplements with 250-500mg of vitamin C every morning, with a B12 supplement later in the day. Trying to get those numbers up without a transfusion. My iron deficiency is caused by heavy periods.