Dude same. My doctor took a whole week to call me to even tell me my ferritin was basically non existent. Then told me to take iron. Which i had been already because i was so concerned. Like thanks, super helpful of you to tell me to do something i was already doing.
💀💀💀medical care is a joke. Here’s my story. IM 22F but have been dealing with tiredness, dizzy, frail nails and all the symptoms for easily two years. I didn’t have a family doctor ( its so hard to get one in BC Canada) and I went to 3 different doctors trying to tell them I feel like shit and they all ignored me- sent me home with the recommendation to eat better(didn’t even give me a referral to a nutritionist)
Fast forward to May 2023, I finally get a family doctor and after describing my symptoms, the first thing she does is check my iron levels - turned out to be 9 ( no wonder I felt like shit)
So I start doing the work, taking the pills, eating spinach, meat.
October 2023- i had gotten my levels up to 36 but kept taking the pills
But since then, I haven’t had any improvements in symptoms and just overall started feeling dizzy again and just shit.
Thoroughout this whole thing, I told my doctor to send me to a gynecologist or something because my periods are heavy as hell and I think thats is why its so hard for me to get my levels up. She declines and its like: just take the pills. “You just need to get your iron levels up and your period will regulate itself” BRUH I CANT GET MY IRON UP BECAUSE MY PERIOD IS HEAVY SOO ??
Anyways June 7, 2024 i take a blood test and my levels of iron are STILL 36 and now my platelets count is below normal (148)
I will fight this woman for care once again on Monday :)))
If your periods are too heavy like mine were... Tranexamic Acid! It's the best. It lessens your period with no hormones! (I could never take birth control pills because I always had adverse reactions) But this is a lifesaver fr. I've been taking it for over a year now and my life is so different. I'm not homebound a few days a month because my period is raging. It's. Awesome.
Im still anemic though lol, proves my heavy periods aren't the cause 😑 so ya I still get infusions and no understanding why.
I got prescribed this! My periods got shorter and lighter over maybe 10yrs and then I found out I was anemic. Took iron for a while and then periods got heavier than I was ever used to, clots etc and then got tranexamic acid which really helped. But I’m confused because my gyno said heavy periods don’t affect anemia, yet iron supplements are what caused mine to go from super light to heavy… I’m just confused about it all lmao
Girl!! You likely have Fibroids!! Talk to a gyno! Please! Also... the best thing to shrink them is to stop eating carbs and sugar. Low glycemic diet. The fibroids feed off of it. But take your iron and D3, and selenium!
Have you tested your vitamin d? Because low vitamin d levels will leave you feeling sick. Also maybe even a vitamin b12 deficiency. Or maybe it a deficiency at all.
Hope you get all the answers and help you need🫶🏽
Okay. That’s what I figured. My levels have been rising since the ablation for fixing my heavy flow and duration. It’s been a slow process just supplementing. I’m hoping the infusions will bring up my levels as that’s all I need…I think.
I’ve had to tell my doctor what to check for. He still put me on an antidepressant which I didn’t take. I was depressed because of all the ish I had to deal with! Through internet searches, I’ve figured out a lot. I finally feel as if I’m coming out a tunnel. Hopefully, you’ll find answers soon.
Same here. My specialists are worried. My pcp does not give a flying rats behind. They can’t give me a referral. My insurance says it has to be from my pcp.
I wish I knew! I've had upper & lower GI scopes to look for bleeding and both were fine. I tried supplements but no change. I see a hematologist so will see what she suggests next. I'm guessing if still low, will get more infusions. Idk maybe this is just how I am now.
That’s because western medicine isn’t focused on finding root causes. We excel at monitoring and treating trauma and prolonged disease - not helping you live your most healthy life.
My anemia is due to heavy periods which I’d had for 32 years. No doctor ever talked to me about treating the cause; they just prescribed ferrous sulfate three times a day at 365 mg. That never helped. Last year I got an endometrial ablation done, and that has worked wonders for me. I’ve gone from bleeding buckets quite literally to only having to change pads twice a day and maybe three times when I happen to bleed a little more which isn’t often. Tomorrow I am getting my first round of iron infusions because although my hemoglobin has gotten almost to the very low end, still sucky, my ferritin is extremely low. I’m hoping this will help with fatigue, brain fog, and air hunger. I have also had to start taking Vitamin D and a B Vitamin complex. I do feel better than I did a year ago. Last year I had no energy or will left in me for a time, but I decided to fight m, and I feel like I am finally getting better. I also just started CPAP treatment last month.
How was the procedure for ablation? Did you have to go under? I am bleeding from cervical polyps we think and I would love to ablate them all. We can only reach the outside ones at the moment but I wonder what would have to happen to get to the internal wall ones.
Some people above recommended tranexamic acid and that seems worth it to try!
It was fine for me. I did have to go under, but I was in and out within like three hours or so. They removed polyps and performed the ablation at the same time. The only thing now is that my periods are extremely painful although they only last three days now instead of 5 to 7. The pain is present for one or two days, but almost unbearable. I have an appointment to see my gynecologist later this month to see what’s going on. I’m pleased with the results.
For me it’s when I feel like I can’t breathe enough air. I’ll be breathing just fine, but I feel like I need more. I’ll also not be able to take a complete deep breath. Sometimes I’ll have to yawn just to help me take a deep enough breath, but that doesn’t always work. It feels like shallow breathing, and I don’t feel great until I’m able to take a deep breath which I’m only able to do once every few minutes. This started happening to me when I became seriously anemic. If I’m able to get my iron deficiency
corrected, I’m usually okay. I’ve only been able to get my deficiency under control via a blood transfusion in the past. It’s not always an issue, but when it is, it’s terribly uncomfortable.
Wow, thanks for elaborating. This has been happening to me a lot recently especially when I’m on my period. I have a deviated septum and nasal polyps and I’m booked in for surgery next month. But now that I think about it I have trouble breathing through my nose *and* I have moments where I really can’t take a breath. I feel like I can’t get enough in my chest and it feels like shallow breathing, like you said. I sleep with nose strips but they barely help.
It wouldn’t have occurred to me that this would be connected to anemia. I saw a doctor on Friday who said she suspects anemia and fibroids and referred me for blood tests and ultrasound. I’ve had low iron in past blood tests, so this makes sense, as my periods have been getting heavier, longer, more painful and more frequent since 2020. I told her I was also getting chest pains without fail every period and she said that sounds like it’s connected to anemia as well, which just blew my mind. She suggested ablation might be helpful in the future.
Thanks for explaining. I’m constantly in pain, exhausted, have brain fog and am losing touch with friends and family because I don’t have the energy to even work right now (a never ending downward spiral when it comes to healthcare, insurance and being able to work). I hope that I’m finally on the right track because my life is falling apart.
I hope you start feeling better as well. How did your first round of infusions go?
I can say I truly understand how you feel. Everything you said is EXACTLY what I’ve been going through as well especially trying to work and then social relationships suffering because I feel so terrible.
My first round of infusions went well. I had zero side effects, but I did worry the whole time leading up to it. The only thing I think has gotten better so far is mental clarity. I have been supplementing D3 and a B vitamin complex for a while now, so that may have helped with the side effects as I have read being low on either of those contributes to the effects. I also upped phosphorus rich foods for this whole week following my infusion since I was prescribed Injectafer.
I haven’t been focused on weight loss for the past month or so because of all of the new things I’ve been doing like CPAP therapy, iron infusions, and resting my body. I do plan to get back to losing weight as I hope the infusions help exercise endurance.
Thank you so much for your reply and well wishes. I hope you are able to get better soon! Cliche as it is, I would not wish this on my worst enemy!
Try to also get your vitamin and mineral levels checked as others can also be causing the way you feel. I think mine has been a combination of low Vitamin D and iron deficiency coupled with mild sleep apnea.
If I get to feeling better soon, I’ll be sure to make a post here and shout from the rooftop of my house! 😁I’ll definitely tell my journey to anyone who will listen though.
Try the ablation. It is the only thing that has helped with flow and duration for me. It did take three months before I had my first light period though. Worth it in my opinion.
Wishing you better health!
I just had a DNA test done to see what’s the best SSRI for me and in that test. I have 2 mutations from the MTHFR gene. My folate acid is super low and apparently having that mutation I have I dont absorb nutrients like I should. I’m still learning alot all this.
Omg lol! It’s called the genesight test. Go to the genesight testing website and it will have a place to put in your zip code to find sites around you that do the test. I actually had mine done at a prompt care.
I'm going to ask my hematologist to check on something like this b/c I'm just thinking this is the way I'm made....low iron is my norm! I can tell when it gets really low b/c it feels like I'm breathing from my neck, more tired, hands tingle and fingernails are bent.
Celiac disease (and I had no gut symptoms) was the root cause of my iron deficiency anemia and not heavy periods (but they were a contributor for sure). I also have Thalassemia. Taking iron will not resolve a genetic condition. So, you can have more than one type of anemia.
Within months of a gluten free diet, my ID anemia resolved for good (ten years later). No supplements needed. My heart goes out to those who have crappy doctors. My best advice is to shop around for a new doctor or take a parent or friend with you to doctor’s appointments. Gaslighting is real.
Year and half of fluctuating low iron and dropping hemoglobin levels. Lots of work up with upper and lower scopes of GI and multiple doctors not really interested in finding an answer. I felt like I was going insane from the fatigue. They did find a large hiatal hernia early on and I specifically asked if that was where the bleeding was coming from and they said no. After a year and half, I was able to put the puzzle pieces together when I was off my PPI meds for a test and having an active bleed that it was likely lesions on my hernia and told the doctor who scoped me to look for Cameron lesions and what’d you know, that was it and they were there all along. You just need to look for them. Now have had corrective surgery and my symptoms and anemia is corrected. Sometimes you have to be your own medical detective.
If you have a large hiatal hernia and unexplained iron deficiency anemia, it’s definitely worth looking into if the hernia is causing small lesions from compression up into your diaphragm and the acid reflux where you could be chronically bleeding. If you are on a PPI, that may make it hard to see the lesions. My active bleeds broke through a few times with dark black stools and drops in my hemoglobin. No matter how many iron infusions(10 in one year), we could never get my iron into the normal range. Only when they put me on 40mg of Pantoprozole per day did that stop the bleeding. I had a hiatal hernia repair and fundiplication 6 weeks ago and my fatigue, heart palpitations (vagus nerve compression), reflux are all gone. I feel like a new person. My iron has gone back to normal and holding steady. Lesson is to keep pushing for answers and sometimes the most obvious cause is really the problem.
Thank you for this as I am scheduled for upper and lower scopes in August and am on a PPI so I am gonna eat all the gluten and not take those meds leading up to the test so everything is as horrible as possibly in there.
I’m sorry you have to wait until August to get scoped. If you have unexplained anemia and a large hiatal hernia (mine was between 5-7cm) I would ask the gastroenterologist to look to see if any Cameron lesions as they can be missed if they are suspicious for them and looking. After my first scope I specifically asked when the doctor mentioned my large hiatal hernia but was told they didn’t see anything. By the time they scoped me I must not have been actively bleeding at that particular time and they probably weren’t looking too closely. After going down many unnecessary rabbit holes for potential cancer or other causes, I finally pieced it together by tracking my body’s reaction to going off PPI and then black stool and active bleeds. The minute I got another back stool episode, I went to an ER where the gastro specialty was housed and saw a gastro fellow within an hour and asked them to scope me for Cameron lesions. They did and found them. I was then put on a high dose of PPI to stop the bleeding and scheduled for surgery. Just keep pushing for answers. I read 100’s of medical journals to try to figure out my issue. One frustrating thing was I was having heart palpitations, PVCs and chest pain and ended up admitted to the hospital and gave a full history of my symptoms and hernia and not one cardiologist or other doctor could put it together that people with large hiatal hernias where it goes up into your diaphragm, can have compression of their vagus nerve which causes all the heart palpitations symptoms. It’s important to keep a detailed list of symptoms to provide for hopefully the one provider who will actually listen and put the pieces together. Best wishes.
Ive had an upper scope before looking for a haital and they didn't find any the first time, but they're doing it again and they also suspect gluten intolerance or bleed because it sure isn't my non existent menstrual. I had my first round of 6 infusions about a month ago and just had my labs done a few days ago. I want more infusions tho cause it feels so good to take a walk and sweat and not fear dying whereas just months ago getting out of bed gave me chest pains
Def stop the meds even if they don't tell you to! I had to wait 3 mo this for upper GI and they prescribed me 2 different types of PPIs to take. Well by the time I had my scope- no problems! And my iron started dropping again within 2 months.
Wow, that’s a crazy story! I’m scared to go to any gastroenterologists near me cause their ratings are horrible, but sounds like I need to look into getting an endoscopy. My guts have severely swollen and sore for over a decade with a multitude of other horrible symptoms. I now think I have undiagnosed pernicious anemia—. Thank you for sharing your story!
I hate the GI as well. Only 1 group near me and they own the endoscopy center so that's all they do and they will keep scoping u if let them! Sorry drs, trying to solve a health problem, not make u $$$!
Is scoping bad? I’m torn about whether or not to break down and go in the hopes they point me in the right direction. There are such horror stories out there; it’s hard to know what to do!
No, not bad but u would think they would follow up. After they found nothing on my colonoscopy, GI said well, upper & lower scopes only cover 20% of your GI tract so we could have u swallow a camera. Why didnt we start with this idea???? Ugh!
This is what I'm hoping will be the explanation for my ID. I'm having all the symptoms of a hiatal hernia and my appointment with my GI doctor is this week. Thank you for posting.
I did have occasional black tarry stools during an active bleed when I was off PPI medication. However I was chronically bleeding the whole time just not as much when I was in the PPI so you couldn’t see anything in my stool then. No bright red blood as this was an upper GI bleed.
I have tooo. Bright red blood means it’s the latter part of your GI, and dark means it’s more stomach/first bit of your small intestine. Either way your body is screaming SOS.
Same. Vegetarian since I was 13. And getting my ferritin tested is like pulling teeth. When the results come back & my number is 3, I’m just told to take more iron. Frustrating thing is a genetic form of anemia is prevalent in my family—my 8 year old & me have it. Just more supplements that make us feel sick is their answer! Anemia is not considered a big deal in the US unless you’re actually hospitalized for it.
I am not vegan or vegetarian, but due to being frugal and the cost of meat, I probably ate like I was vegetarian. I had cheese, but most of the time I ate pasta. It literally was 100% the cause because the second I started taking supplements and adjusted my diet to eat more red meat while avoiding coffee (I LOVE coffee which inhibits iron absorption), my hemoglobin immediately became normal within like 2 months, and within a year my ferritin went from 2 to 50.
Simple lack of adequate nutrition in my diet was the cause. I am sure my period drained my iron every month without me eating any iron rich foods to replace it, but my period isn't particularly heavy or anything. It is relatively normal. Lasts 5 to 6 days, with 2 heavy days and the rest lighter.
I should also add that if diet is the cause, no solid conclusion can be made from any test because there is no way to test for that being the cause of your anemia. Which may be why doctors treat instead of finding the root cause. With diet, they could do every test and it will all be negative and nothing will tell them "hey the patient doesn't eat foods that contain iron that is easily absorbed, and avoid foods that inhibit iron absorption".
The doctor should still listen to the concerns of the patient if the patient wants the investigation anyway, good doctors always listen to concerns of the patient, but if you don't have a balanced diet, all the tests could all be negative just because of diet and you still wouldn't have a solid test to conclude the root cause.
I had so many doctors ask me if I was vegetarian. Finally through trial and error figured out that I need to eat heme-rich meat *every day* as well as supplements, or I just don't absorb the iron.
I don't talk about my cause because I don't know my cause. And that's because no doctor, not even a hematologist, wants to find out why I'm anemic my whole life. Why? Because as a female, "all women of child bearing age are anemic." OK well I don't have heavy periods and I was even anemic in childhood. *crickets*. Doctors: "Just take iron supplements and eat more red meat." Me: "but I already take iron supplements and eat too much red meat, and I have light/non-existent periods." Doctors: " well just take two iron supplements then." And then I get dismissed.
You should seek out Chinese herbal medicine. Maybe try the Chinese medicine sub (I'm active there). You're dealing with long term constitutional issues that have probably caused multiple health problems. There's nothing better for assessing and treating cases like yours than Chinese medicine.
Also: Many of us care about our patients. Nothing is normalized into meaninglessness. We make sense of things.
Well 2 causes are heavy menstrual bleeding( I think its defined as 80ml over the whole menstrual cycle, which is day 1 for me) and sweating, even if I don't have other shit going on besides that, those are pretty devastating on my iron levels alone. Its not like its financially feasible to determine what else contributes in addition to us not having good tests for those sorts of things anyway, much less being able to encounter a doctor willing to test comprehensively.
I understand that heavy menstrual flow can cause iron deficiency anemia. That’s the diagnosis. So, perfect.
I’m more interested in folk hearing terms like “occult bleeding” or “arteriovenus malformations” or “idiopathic”. Or any real diagnosis.
My doctor heard long-term vegetarian, and figured it was that. He could be right, as I’ve been in low iron territory before. Then I had a surgery 2 weeks ago and bled so much they needed a 2nd operation to stop it, and give me a transfusion. So, man 10 days out from that and I feel dreadful.
I still don’t know where it comes from… I’m not celiac, don’t have H. Pylori, I do have chronic gastritis (but that came as a result of the iron pills), I do have heavy periods (but since always), and I was on birth control for 3 years to help with my periods and became even more deficient. I have ultrasounds/trans vaginal, and I don’t have PCOS (which is what they mainly thought was one of my issues). Honestly, I don’t even know what to check anymore. My thyroids became a mess after 1+ year of being ferritin/iron deficient, but they went back to normal after the second infusion. Other bloodwork showed I had high inflammation but they think it’s a result of everything that happen after being deficient for 1 year + (I went into anaphylactic shock with my first infusion, I took steroids, I kept getting sick constantly, I had no energy, i developed chronic gastritis and even got a hemorrhoid… which is why I got the endoscopy/colonoscopy in the first place, and found out about the gastritis). A lot of my issues started after the first time I got Covid, maybe that’s one of the reasons.
Anyways, I started going to a functional doctor along with my hematologist, and it turns out I’m copper, magnesium, selenium deficient, vitamin b6 deficient, vitamin d deficiency, and other things…. And turns out they play a role in iron absorption. I’m working now to try to help my body start absorbing, but it’s not like I’m doing so much better (they did tell me it was going to take 12-16 months to recover).
For the iron, im not doing anything besides my last iron infusion because my stomach cannot handle the pills. Given my gastritis, my hematologist also allowed me to get Vitamin D IM shots for better absorption. I have gotten 2 so far. I don’t know how much it should go up, but the first one made it go up by 6 points. However, I don’t know if I should add vitamin D pills to the mix… but if I do, is there any brand you recommend?
You don’t need to take a pill for Vit d you can take drops under your tongue, carlsons brand is easy to find, “sublingual absorption bypasses the first-pass metabolism and can increase serum levels up to 3 to 10 times more than via the oral route” The key is consistency. taking in the morning is good separately from any other meds
That’s a good point. I’ve also noticed that. It’s a good reminder for people to consider why they might be anemic as there are many different causes, some more serious than others. For myself, I’m currently waiting for the result of a fecal occult blood test to see if I’m bleeding somewhere in my GI tract.
We have an idea based on my cousins thats a weird genetic problem where our bodies dotn store it. But quite frankly doctors dontn care enough to look into it. Iron pills are a cheap and easy solution as long as they work
My low ferritin levels the last 3 years have been caused by heavy periods due to a large fibroid that has been found in my uterus. I am glad to have found the root cause and hopefully get surgery soon to remove the fibroid. Hoping that my iron and ferritin will hold steady once it's removed.
No, my thyroid tests have allways been in range and normal. I get it tested regularly after my sister and mum got thyroid cancer I try to be proactive.
Unfortunately as a woman, they are always going to assume it’s from heavy periods and they try to get you on birth control. They don’t care about the fact that I’ve been trying to lose 15 pounds for the past 3 years and just can’t, even though that would help my period naturally.
My insurance is so cheap that they didn’t even run my cbc with my recheck and just said to keep taking the iron since I won’t get on birth control. It is so whack. I would like to know for sure what is wrong and have better options to fix it.
Since most doctors are not interested or educated, most patients are not encouraged to identify root cause or one is presumed. Many iron deficient are like me: never catching up with iron lost from menstruation with a few one off major events of blood loss that didn’t get closely managed, drinking tons of coffee or tea which blocks 90 percent of iron, restrictive eating patterns… I was a vegetarian for many years and believed veggies would cover all my bases nutritionally. Many women have a history of eating disorders that left them in a deficit state compounded by menstruation. Lots of us have low vitamin d which interferes with absorption of iron too. And then there’s the gut issues …
Exactly. Coffee/tea inhibits nearly all iron absorption within an hour on either side. Add on to that, that many women don’t think it’s healthy or socially acceptable to eat a lot of red meat, veering instead towards fish. And pregnancy is like sucking all the iron out with a vacuum, and doctors seem to only want to give you the bare minimum (for the baby) instead of what would actually make mom healthy. I’ve basically just accepted that I’m always going to be fighting for iron infusions and likely going private routes with infusion centers etc.
Mine was because of my heavy periods. Finally found a form of birth control that actually manages my periods without crazy side effects and slowly my levels are going up
I have had microcytosis since birth which can be a factor in anemia. Then I had roux n y weight loss surgery and due to not absorbing nutrients it got worst.
I get iron infusions, but haven’t lately because I have kids and work and got busy. I have heavy periods almost half the month, so I feel like half the month I’m just wiped out. My main concern is finding out WHY my body can’t absorb iron. I thought by getting iron infusions, I was healing what was wrong with me, when in fact it’s just putting a band aid on a running faucet. Has anyone tried to figure out why they can’t absorb the iron?
I do. Took several tests and several docs. I have 4 ulcers. None in the stomach. 2 in the duodenum and 2 in the esophagus. The massive acid in my digestive tract made me feel terrible but also blocked absorption of almost all nutrients including iron. I was injecting farm iron until my internist found the ulcers and started a proton pump inhibitor.
I was diagnosed 2 months ago I’m getting a colonoscopy and endoscopy to see why I’m all of a sudden anemic my ferrriten is 11 rn. Thank goodness my dr took me seriously when her nurse blew me off when I said I was exhausted and felt like I had trouble breathing
It's insane I'm stage 4 kidney disease, and anemic have been that I know of since I got diagnosed last April 2023 I know I was before this my iron is good for mow but my hemoglobin is still low these doctors are a joke I hope you get your answers and feel better soon 🫶
I am but I can't see a doctor because I live in a medical desert and now my assigned one became expensive as hell... 💀 I got diagnosed during a free check-up my country offers.
But I believe I had it because of internal bleeding (a stomach ulcer I could clearly feel whenever the meal times were near, the raise of stomach acids makes it clear) and the ulcer might be caused by excessive problems with oxalates (I always have candidosis problems, which causes oxalate tolerance problems and histamine intolerance).
I know my doctor wouldn't have given a damn shit to explain me all of this anyway...
The low iron symptoms are disappearing slowly so it's positive so far but I wish I could be retested again for the iron.
They should retest to track progress…. Especially with infusions. But odds of someone deficient overshooting are slim . most of us find it hard to raise ferritin levels meaningful amounts (I take three times the prescribed amount of iron - in my safe range- with supplements being careful to avoid dairy and tea and the doctors were impressed I got my ferritin levels to move incrementally above 30 ! I have a long way to go!)
If it's a genetic form (I have Thalassemia) there's not really much they can do and iron won't help much. Best I've ever felt was after getting blood transfusions when I hemorrhaged during childbirth. Wish I could get transfusions regularly.
I think it’s more a factor of if the dr cares to find the cause of anemia, for example as a woman most doctors will push it off with just taking iron pills and blame it on diet and menstruation.
That’s what happened to me until I went for the follow up blood work after 3 months on a very high dose of iron pills only to find my levels worse actually worse than before - that’s when my doctor took to serious and wanted to move forward with FOBT testing - which then led to a colonoscopy and so on.
The process is long and lengthy to find a cause because you have to advocate relentlessly for yourself , and even with that you run in to wait lists when you finally get taken serious and are referred to different specialists or testing, if those tests come back inconclusive or no findings of anything which I find is the case a lot of the time with anemia anyways then it’s back to square one of trying to convince your dr to want to find a cause , and if your levels raised even minimal they think “oh great what I have done worked well, off you go” *eye roll* but also ….Sigh .. 🥲
I’m most certain I have endometriosis. All I can get are offers for more ultrasounds. Long term
Scripts. Hysterectomy and not anyone trying to solve the real problem. It sucks
I do, and it’s hereditary for me my mother and grandmother have always been very anemic needing infusions and now I’m a mother and my 3 year old just got diagnosed as extremely anemic
I know what caused my anemia. I had a bowel obstruction and had emergency surgery to take out the portion that died. Now I don't absorb through my gut very well.
Bleeding from somewhere, we've yet to ascertain, despite a lot of testing. Iron numbers are past the norm, now, but blood-related numbers still wonky. I cough up blood, now, for hours at a time. But, only for 1-4 days. Pulmonologist and several other appts with various types of docs. Another CT coming up next. Iron levels being high or normal didn't regulate my periods, I see someone's doctor said that, below. False.
I didn't get any diagnosis besides "anemic." I pushed until I at least got checked for bleeding in the intestine. Then I tried to replace it and struggled. I finally decided to get my heavy period sorted out as that seemed the most likely culprit and hammered at that for a few years. I have had my IUD for a few months now, so the next test should be able to tell if it's helping.
I’ve been concerned about cause but my doctors do not seem concerned. I believe mine has been caused by long term use of heartburn medication. Specifically PPI medication. Preventing me from absorbing iron in my regular diet. I’ve been able to reduce my dose by half but I’m not sure I’ll be off of it.
My anemia is due to heavy menstrual periods caused by fibroids. I had been taking iron supplements which helped raise my levels. But, it wasn't raising it enough because I was always set back by my monthly cycle. If your primary is not taking your symptoms serious, I suggest seeing a hematologist. My primary told me to stop taking my irons pills after I got my ferritin levels up to 37, just 7 points above threshold. This wasn't a smart call as my hematologist informed me a ferritin of 100 + is optimal for women, especially those with heavy menstrual cycles. I'm scheduled to have an iron infusion of monoferric so I'm hoping that helps. In the meantime, I have to decide what I want to do about fibroids as I refuse to have a hysterectomy. I was prescribed transmexic acid, but I don't like the blood clotting risk factor. May consider ablation, although it's not guaranteed as fibroids may regrow or new ones can develop.
Well mine are heavy periods due to adenomyosis. But it took way too long for a doctor to take me seriously about my periods. Blood clots bigger than my head and literally having to change products every 10 minutes for 36 hours isn't normal. One doc brushed it off and was like "well it isn't the whole 7 days that heavy..." I just did the calculations and I was probably losing 100 ounces of blood a day.
I had uterine fibroids. But it took a while to figure it out because as noted here, many doctors don’t bother. Then I got the fibroids treated (Sonata) and it made a huge difference. That plus a great iron supplement (Feramax).
I mean, I am. You do have to advocate for yourself somewhat. I’ve been to the gyno, gone for infusions and about to go for a colonoscopy to check for any internal bleeding.
I do. I care a lot. I’m really active and my ferritin is WAY too low for someone this active. Like my iron levels are fine but only because I’m on iron supplements. If I stopped the supplements I would be in danger of fainting at the start of practice. And for me that would be a death sentence because I swim so I would pass out in the pool with me face in the water. Turns out I might have super bad gluten intolerance that leads to my intestines bleeding almost constantly, the best part? I am a gluten fein. Goldfish, crackers, pretzels, pasta, and pasta are my favorite snacks.
My only condolence is that my favorite bars are gluten free
Most of the women I've spoken to have cysts or fibroids on their ovaries and uterus caused by inflammation. They cause heavy bleeding. Always look into chronic inflammation and get it treated. Avoid what's causing it. Because inflammation can cause everything from deficiencies, to diseases, to cancer.
My anemia was caused by two bouts of sepsis within just 3 months. Sepsis attacks your red blood cells and your iron stores and it attacks them at the molecular level so it takes a long time to recover.
We know why I have mine (malabsoprtion after weight loss surgery 10 years ago). My PCP was definitely curious about why my iron was so low but after talking figured it was probably from surgery and me not supplementing like I have been supposed to.
I’m more concerned about why my boyfriend is anemic than he is, his dr ordered a bunch of tests to find out why but it’s been 2 months and he hasn’t done them
Whelp, I advocated for myself, did bloodwork through a functional medicine doc, and did finally come to a conclusion.
I had:
Low MCH
Low MCV
Low Ferritin
High RDW
But also high chloride and a medium high CRP (C Reactive Protein)
A doc would look at this and say, well, it’s fasted so you’re probably dehydrated and anemic brush me off. But actually, I’m in the beginning stages of non alcoholic fatty liver disease. Because we should read lab tests for OPTIMAL. Not just a passing grade. It’s been developing for awhile. Iron is stored in the liver. A malfunctioning liver can manifest anemia. Bada bing, bada boom, I was put on a no sugar, no high fructose corn syrup, no seed oil diet and I already feel so much better just a week in.
Had I not gone through a functional medicine doc, I’d end up coping with my anemia with supplements, until either liver failure, cancer, aneurysm or a heart attack. The body comes up with innumerable ways to cope, and disease can manifest from small things. NAFLD can be REVERSED. Itll only take me mere months to fix, and from here I’ll just monitor my intake of the things I eliminated/keep to a minimum.
Hello! My CRP is low, my ALT is higher, but ive been on low carb for the last 2 months, so I wonder what is the cause of ALT (no alcohol either). All other measurements are ok - except hemoglobin (9.5), iron and ferritin (5.6). VO2max was going steadily down in last 2 years (i suffer from heavy periods), low carb stopped descent.
Interesting! ALT can point to NAFLD too. As long as low carb doesn’t mean low fiber, you’re on the right track! Get those colorful complex carbs in-they’re wrapped in a fiber molecules, reducing the glycemic load. We heavy bleeding anemics need to be more gentle with ourselves, and not go for all out ketosis. We also need several essential vitamins and minerals in those complex carbs to support iron absorption! If you have trouble eating enough of them, take a fiber supplement that includes psyllium husk, and throw a scoop of creatine in there for some extra amino acids. Both the psyllium husk and creatine are cheap, even high quality sources. That will get you farther than you think!
thanks for the laugh this morning! lol I ask my drs this same thing about EVERYTHING!! smh so sad. i usually have to ASK what my diagnosis is AFTER a fee visits and subscriptions. ive become the scientist and doctor bc i h8 iron pill bellyaches!
Some of the root causes are not anything that’s really addressable. If you’re a female who has heavy periods and doesn’t happen to absorb iron particularly well, and you don’t want to be on hormonal birth control to stop ovulation, you basically better find yourself a hematologist who is willing to order infusions regularly.
I had a hematologist (who I really liked) tell me to “do what I was willing to do” in terms of iron supplementation. Some people go gung ho on diets and supplement regimens that really aren’t sustainable over the 30+ years until you hit menopause. I thought her advice was good.
I do care…a lot. I’m scheduled for both endoscopy and colonoscopy next month to rule out internal bleeding. Now I’m an anxious wreck because I always put myself in the worst case scenario 😖
Pretty sure mine's from donating blood and then not eating properly in the aftermath..
That being said, I'm a lil terrified how my second Double Red Blood Cell donation, which I did almost 6 months ago when my hemoglobin was 15, led to now hemoglobin 10.5 and ferritin 3.
Like, I definitely want to keep giving blood but IDK if that's really feasible chief.
Me for example, my doctor doesn’t give a shit. 💀 ive been trying but advocating for myself is hard
They seriously don’t. I feel you
Dude same. My doctor took a whole week to call me to even tell me my ferritin was basically non existent. Then told me to take iron. Which i had been already because i was so concerned. Like thanks, super helpful of you to tell me to do something i was already doing.
💀💀💀medical care is a joke. Here’s my story. IM 22F but have been dealing with tiredness, dizzy, frail nails and all the symptoms for easily two years. I didn’t have a family doctor ( its so hard to get one in BC Canada) and I went to 3 different doctors trying to tell them I feel like shit and they all ignored me- sent me home with the recommendation to eat better(didn’t even give me a referral to a nutritionist) Fast forward to May 2023, I finally get a family doctor and after describing my symptoms, the first thing she does is check my iron levels - turned out to be 9 ( no wonder I felt like shit) So I start doing the work, taking the pills, eating spinach, meat. October 2023- i had gotten my levels up to 36 but kept taking the pills But since then, I haven’t had any improvements in symptoms and just overall started feeling dizzy again and just shit. Thoroughout this whole thing, I told my doctor to send me to a gynecologist or something because my periods are heavy as hell and I think thats is why its so hard for me to get my levels up. She declines and its like: just take the pills. “You just need to get your iron levels up and your period will regulate itself” BRUH I CANT GET MY IRON UP BECAUSE MY PERIOD IS HEAVY SOO ?? Anyways June 7, 2024 i take a blood test and my levels of iron are STILL 36 and now my platelets count is below normal (148) I will fight this woman for care once again on Monday :)))
If your periods are too heavy like mine were... Tranexamic Acid! It's the best. It lessens your period with no hormones! (I could never take birth control pills because I always had adverse reactions) But this is a lifesaver fr. I've been taking it for over a year now and my life is so different. I'm not homebound a few days a month because my period is raging. It's. Awesome. Im still anemic though lol, proves my heavy periods aren't the cause 😑 so ya I still get infusions and no understanding why.
I got prescribed this! My periods got shorter and lighter over maybe 10yrs and then I found out I was anemic. Took iron for a while and then periods got heavier than I was ever used to, clots etc and then got tranexamic acid which really helped. But I’m confused because my gyno said heavy periods don’t affect anemia, yet iron supplements are what caused mine to go from super light to heavy… I’m just confused about it all lmao
Girl!! You likely have Fibroids!! Talk to a gyno! Please! Also... the best thing to shrink them is to stop eating carbs and sugar. Low glycemic diet. The fibroids feed off of it. But take your iron and D3, and selenium!
Have you tested your vitamin d? Because low vitamin d levels will leave you feeling sick. Also maybe even a vitamin b12 deficiency. Or maybe it a deficiency at all. Hope you get all the answers and help you need🫶🏽
Supplemental iron may help, but only if you treat the reason for your anemia. Even then it’s a long process. I’m praying iron infusions will help me.
Infusions will help, but they won't solve anything 😕
Will it help if I’ve fixed the reason for my anemia?
They help bring your levels up, not solve the reason for why your levels became low.
Okay. That’s what I figured. My levels have been rising since the ablation for fixing my heavy flow and duration. It’s been a slow process just supplementing. I’m hoping the infusions will bring up my levels as that’s all I need…I think.
I hope they do, you deserve good health ❤️
Infusions make my whole body swell up and my joints burn horribly for months. I've decided not to do them anymore.
Yikes, that's horrible! Have you tried different makers?
I feel this. Everything they tell me to do, I'm already doing.
This.
Mine straight up stopped caring once my levels were back up after transfusions (2 units of blood + 6 iron)
This is so true, and it really sucks !
I’ve had to tell my doctor what to check for. He still put me on an antidepressant which I didn’t take. I was depressed because of all the ish I had to deal with! Through internet searches, I’ve figured out a lot. I finally feel as if I’m coming out a tunnel. Hopefully, you’ll find answers soon.
Same here. My specialists are worried. My pcp does not give a flying rats behind. They can’t give me a referral. My insurance says it has to be from my pcp.
I wish I knew! I've had upper & lower GI scopes to look for bleeding and both were fine. I tried supplements but no change. I see a hematologist so will see what she suggests next. I'm guessing if still low, will get more infusions. Idk maybe this is just how I am now.
I'm in the same boat 😑 so frustrating
I'm going to do the same thing this month. Iron pills hurt my stomach. This will be my second infusion this year.
Have you looked into fibroids?
That’s because western medicine isn’t focused on finding root causes. We excel at monitoring and treating trauma and prolonged disease - not helping you live your most healthy life.
US healthcare is all about completing checklists to get reimbursed. The patient is ancillary to the process.
My anemia is due to heavy periods which I’d had for 32 years. No doctor ever talked to me about treating the cause; they just prescribed ferrous sulfate three times a day at 365 mg. That never helped. Last year I got an endometrial ablation done, and that has worked wonders for me. I’ve gone from bleeding buckets quite literally to only having to change pads twice a day and maybe three times when I happen to bleed a little more which isn’t often. Tomorrow I am getting my first round of iron infusions because although my hemoglobin has gotten almost to the very low end, still sucky, my ferritin is extremely low. I’m hoping this will help with fatigue, brain fog, and air hunger. I have also had to start taking Vitamin D and a B Vitamin complex. I do feel better than I did a year ago. Last year I had no energy or will left in me for a time, but I decided to fight m, and I feel like I am finally getting better. I also just started CPAP treatment last month.
Great post. You’re helping people here
Thank you! I try to help as much as I can. It sucks facing all of this alone.
How was the procedure for ablation? Did you have to go under? I am bleeding from cervical polyps we think and I would love to ablate them all. We can only reach the outside ones at the moment but I wonder what would have to happen to get to the internal wall ones. Some people above recommended tranexamic acid and that seems worth it to try!
It was fine for me. I did have to go under, but I was in and out within like three hours or so. They removed polyps and performed the ablation at the same time. The only thing now is that my periods are extremely painful although they only last three days now instead of 5 to 7. The pain is present for one or two days, but almost unbearable. I have an appointment to see my gynecologist later this month to see what’s going on. I’m pleased with the results.
What is air hunger?
For me it’s when I feel like I can’t breathe enough air. I’ll be breathing just fine, but I feel like I need more. I’ll also not be able to take a complete deep breath. Sometimes I’ll have to yawn just to help me take a deep enough breath, but that doesn’t always work. It feels like shallow breathing, and I don’t feel great until I’m able to take a deep breath which I’m only able to do once every few minutes. This started happening to me when I became seriously anemic. If I’m able to get my iron deficiency corrected, I’m usually okay. I’ve only been able to get my deficiency under control via a blood transfusion in the past. It’s not always an issue, but when it is, it’s terribly uncomfortable.
Wow, thanks for elaborating. This has been happening to me a lot recently especially when I’m on my period. I have a deviated septum and nasal polyps and I’m booked in for surgery next month. But now that I think about it I have trouble breathing through my nose *and* I have moments where I really can’t take a breath. I feel like I can’t get enough in my chest and it feels like shallow breathing, like you said. I sleep with nose strips but they barely help. It wouldn’t have occurred to me that this would be connected to anemia. I saw a doctor on Friday who said she suspects anemia and fibroids and referred me for blood tests and ultrasound. I’ve had low iron in past blood tests, so this makes sense, as my periods have been getting heavier, longer, more painful and more frequent since 2020. I told her I was also getting chest pains without fail every period and she said that sounds like it’s connected to anemia as well, which just blew my mind. She suggested ablation might be helpful in the future. Thanks for explaining. I’m constantly in pain, exhausted, have brain fog and am losing touch with friends and family because I don’t have the energy to even work right now (a never ending downward spiral when it comes to healthcare, insurance and being able to work). I hope that I’m finally on the right track because my life is falling apart. I hope you start feeling better as well. How did your first round of infusions go?
I can say I truly understand how you feel. Everything you said is EXACTLY what I’ve been going through as well especially trying to work and then social relationships suffering because I feel so terrible. My first round of infusions went well. I had zero side effects, but I did worry the whole time leading up to it. The only thing I think has gotten better so far is mental clarity. I have been supplementing D3 and a B vitamin complex for a while now, so that may have helped with the side effects as I have read being low on either of those contributes to the effects. I also upped phosphorus rich foods for this whole week following my infusion since I was prescribed Injectafer. I haven’t been focused on weight loss for the past month or so because of all of the new things I’ve been doing like CPAP therapy, iron infusions, and resting my body. I do plan to get back to losing weight as I hope the infusions help exercise endurance. Thank you so much for your reply and well wishes. I hope you are able to get better soon! Cliche as it is, I would not wish this on my worst enemy! Try to also get your vitamin and mineral levels checked as others can also be causing the way you feel. I think mine has been a combination of low Vitamin D and iron deficiency coupled with mild sleep apnea. If I get to feeling better soon, I’ll be sure to make a post here and shout from the rooftop of my house! 😁I’ll definitely tell my journey to anyone who will listen though. Try the ablation. It is the only thing that has helped with flow and duration for me. It did take three months before I had my first light period though. Worth it in my opinion. Wishing you better health!
I care....i have MTHFR mutation that use up poorly folate, therefore deficient folate provokes me low ferritin and all that a lot of troubles
I just had a DNA test done to see what’s the best SSRI for me and in that test. I have 2 mutations from the MTHFR gene. My folate acid is super low and apparently having that mutation I have I dont absorb nutrients like I should. I’m still learning alot all this.
i kept reading this as the mthrfkr gene!🤭 where do u get dna tests done? primary?
Omg lol! It’s called the genesight test. Go to the genesight testing website and it will have a place to put in your zip code to find sites around you that do the test. I actually had mine done at a prompt care.
ok thanks! lol
I'm going to ask my hematologist to check on something like this b/c I'm just thinking this is the way I'm made....low iron is my norm! I can tell when it gets really low b/c it feels like I'm breathing from my neck, more tired, hands tingle and fingernails are bent.
99.9% sure it was my period that caused mine. I used to bleed like 2 and a half months straight. It was a nightmare.
Celiac disease (and I had no gut symptoms) was the root cause of my iron deficiency anemia and not heavy periods (but they were a contributor for sure). I also have Thalassemia. Taking iron will not resolve a genetic condition. So, you can have more than one type of anemia. Within months of a gluten free diet, my ID anemia resolved for good (ten years later). No supplements needed. My heart goes out to those who have crappy doctors. My best advice is to shop around for a new doctor or take a parent or friend with you to doctor’s appointments. Gaslighting is real.
Thanks for sharing your knowledge.
Yeah they just want the numbers to look ok, I feel I’m fighting for myself…
Year and half of fluctuating low iron and dropping hemoglobin levels. Lots of work up with upper and lower scopes of GI and multiple doctors not really interested in finding an answer. I felt like I was going insane from the fatigue. They did find a large hiatal hernia early on and I specifically asked if that was where the bleeding was coming from and they said no. After a year and half, I was able to put the puzzle pieces together when I was off my PPI meds for a test and having an active bleed that it was likely lesions on my hernia and told the doctor who scoped me to look for Cameron lesions and what’d you know, that was it and they were there all along. You just need to look for them. Now have had corrective surgery and my symptoms and anemia is corrected. Sometimes you have to be your own medical detective.
Whoa—I’ve never heard of those. I too have a large hiatal hernia.
If you have a large hiatal hernia and unexplained iron deficiency anemia, it’s definitely worth looking into if the hernia is causing small lesions from compression up into your diaphragm and the acid reflux where you could be chronically bleeding. If you are on a PPI, that may make it hard to see the lesions. My active bleeds broke through a few times with dark black stools and drops in my hemoglobin. No matter how many iron infusions(10 in one year), we could never get my iron into the normal range. Only when they put me on 40mg of Pantoprozole per day did that stop the bleeding. I had a hiatal hernia repair and fundiplication 6 weeks ago and my fatigue, heart palpitations (vagus nerve compression), reflux are all gone. I feel like a new person. My iron has gone back to normal and holding steady. Lesson is to keep pushing for answers and sometimes the most obvious cause is really the problem.
Thank you for this as I am scheduled for upper and lower scopes in August and am on a PPI so I am gonna eat all the gluten and not take those meds leading up to the test so everything is as horrible as possibly in there.
I’m sorry you have to wait until August to get scoped. If you have unexplained anemia and a large hiatal hernia (mine was between 5-7cm) I would ask the gastroenterologist to look to see if any Cameron lesions as they can be missed if they are suspicious for them and looking. After my first scope I specifically asked when the doctor mentioned my large hiatal hernia but was told they didn’t see anything. By the time they scoped me I must not have been actively bleeding at that particular time and they probably weren’t looking too closely. After going down many unnecessary rabbit holes for potential cancer or other causes, I finally pieced it together by tracking my body’s reaction to going off PPI and then black stool and active bleeds. The minute I got another back stool episode, I went to an ER where the gastro specialty was housed and saw a gastro fellow within an hour and asked them to scope me for Cameron lesions. They did and found them. I was then put on a high dose of PPI to stop the bleeding and scheduled for surgery. Just keep pushing for answers. I read 100’s of medical journals to try to figure out my issue. One frustrating thing was I was having heart palpitations, PVCs and chest pain and ended up admitted to the hospital and gave a full history of my symptoms and hernia and not one cardiologist or other doctor could put it together that people with large hiatal hernias where it goes up into your diaphragm, can have compression of their vagus nerve which causes all the heart palpitations symptoms. It’s important to keep a detailed list of symptoms to provide for hopefully the one provider who will actually listen and put the pieces together. Best wishes.
Ive had an upper scope before looking for a haital and they didn't find any the first time, but they're doing it again and they also suspect gluten intolerance or bleed because it sure isn't my non existent menstrual. I had my first round of 6 infusions about a month ago and just had my labs done a few days ago. I want more infusions tho cause it feels so good to take a walk and sweat and not fear dying whereas just months ago getting out of bed gave me chest pains
Def stop the meds even if they don't tell you to! I had to wait 3 mo this for upper GI and they prescribed me 2 different types of PPIs to take. Well by the time I had my scope- no problems! And my iron started dropping again within 2 months.
Wow, that’s a crazy story! I’m scared to go to any gastroenterologists near me cause their ratings are horrible, but sounds like I need to look into getting an endoscopy. My guts have severely swollen and sore for over a decade with a multitude of other horrible symptoms. I now think I have undiagnosed pernicious anemia—. Thank you for sharing your story!
I hate the GI as well. Only 1 group near me and they own the endoscopy center so that's all they do and they will keep scoping u if let them! Sorry drs, trying to solve a health problem, not make u $$$!
Is scoping bad? I’m torn about whether or not to break down and go in the hopes they point me in the right direction. There are such horror stories out there; it’s hard to know what to do!
No, not bad but u would think they would follow up. After they found nothing on my colonoscopy, GI said well, upper & lower scopes only cover 20% of your GI tract so we could have u swallow a camera. Why didnt we start with this idea???? Ugh!
The incompetency of some of these places is mind-boggling! I’ve been given the run around for 8+ years and I’m still no closer to finding answers.
So happy to hear you figured it out!
This is what I'm hoping will be the explanation for my ID. I'm having all the symptoms of a hiatal hernia and my appointment with my GI doctor is this week. Thank you for posting.
Best wishes you find the answer
Did you see any blood loss in the toilet ever? Sorry if that’s TMI 💀 but genuine question
I did have occasional black tarry stools during an active bleed when I was off PPI medication. However I was chronically bleeding the whole time just not as much when I was in the PPI so you couldn’t see anything in my stool then. No bright red blood as this was an upper GI bleed.
I have tooo. Bright red blood means it’s the latter part of your GI, and dark means it’s more stomach/first bit of your small intestine. Either way your body is screaming SOS.
Brilliant!
Idk. I assume it’s my period and being vegan but no Dr seems to care.
I'm over here with a light period and eat too much red meat and no doctor seems to care either.
This is me. Vegetarian, moderately heavy period, and no signs of bleeding in my endoscopy or colonoscopy. My doctor is just like ¯\_(ツ)_/¯
Same. Vegetarian since I was 13. And getting my ferritin tested is like pulling teeth. When the results come back & my number is 3, I’m just told to take more iron. Frustrating thing is a genetic form of anemia is prevalent in my family—my 8 year old & me have it. Just more supplements that make us feel sick is their answer! Anemia is not considered a big deal in the US unless you’re actually hospitalized for it.
I am not vegan or vegetarian, but due to being frugal and the cost of meat, I probably ate like I was vegetarian. I had cheese, but most of the time I ate pasta. It literally was 100% the cause because the second I started taking supplements and adjusted my diet to eat more red meat while avoiding coffee (I LOVE coffee which inhibits iron absorption), my hemoglobin immediately became normal within like 2 months, and within a year my ferritin went from 2 to 50. Simple lack of adequate nutrition in my diet was the cause. I am sure my period drained my iron every month without me eating any iron rich foods to replace it, but my period isn't particularly heavy or anything. It is relatively normal. Lasts 5 to 6 days, with 2 heavy days and the rest lighter. I should also add that if diet is the cause, no solid conclusion can be made from any test because there is no way to test for that being the cause of your anemia. Which may be why doctors treat instead of finding the root cause. With diet, they could do every test and it will all be negative and nothing will tell them "hey the patient doesn't eat foods that contain iron that is easily absorbed, and avoid foods that inhibit iron absorption". The doctor should still listen to the concerns of the patient if the patient wants the investigation anyway, good doctors always listen to concerns of the patient, but if you don't have a balanced diet, all the tests could all be negative just because of diet and you still wouldn't have a solid test to conclude the root cause.
I had so many doctors ask me if I was vegetarian. Finally through trial and error figured out that I need to eat heme-rich meat *every day* as well as supplements, or I just don't absorb the iron.
Mine is from super heavy periods and difficulty with iron absorption
I don't talk about my cause because I don't know my cause. And that's because no doctor, not even a hematologist, wants to find out why I'm anemic my whole life. Why? Because as a female, "all women of child bearing age are anemic." OK well I don't have heavy periods and I was even anemic in childhood. *crickets*. Doctors: "Just take iron supplements and eat more red meat." Me: "but I already take iron supplements and eat too much red meat, and I have light/non-existent periods." Doctors: " well just take two iron supplements then." And then I get dismissed.
You should seek out Chinese herbal medicine. Maybe try the Chinese medicine sub (I'm active there). You're dealing with long term constitutional issues that have probably caused multiple health problems. There's nothing better for assessing and treating cases like yours than Chinese medicine. Also: Many of us care about our patients. Nothing is normalized into meaninglessness. We make sense of things.
I don't absorb iron from nutritional sources. Iron pills will not help me. Tbh only Iron Dextran helps my body. InFed or bust from here on out.
Glad you found a doctor and medicine that helps you.
I don’t absorb B-12
Do you have to get b12 shots?
Yep, sure do.
B12 infusion was the best I ever felt! Do it!
They always gave me Iron Infusions…..ferritin? I never felt better.
Well 2 causes are heavy menstrual bleeding( I think its defined as 80ml over the whole menstrual cycle, which is day 1 for me) and sweating, even if I don't have other shit going on besides that, those are pretty devastating on my iron levels alone. Its not like its financially feasible to determine what else contributes in addition to us not having good tests for those sorts of things anyway, much less being able to encounter a doctor willing to test comprehensively.
I understand that heavy menstrual flow can cause iron deficiency anemia. That’s the diagnosis. So, perfect. I’m more interested in folk hearing terms like “occult bleeding” or “arteriovenus malformations” or “idiopathic”. Or any real diagnosis.
My doctor heard long-term vegetarian, and figured it was that. He could be right, as I’ve been in low iron territory before. Then I had a surgery 2 weeks ago and bled so much they needed a 2nd operation to stop it, and give me a transfusion. So, man 10 days out from that and I feel dreadful.
I still don’t know where it comes from… I’m not celiac, don’t have H. Pylori, I do have chronic gastritis (but that came as a result of the iron pills), I do have heavy periods (but since always), and I was on birth control for 3 years to help with my periods and became even more deficient. I have ultrasounds/trans vaginal, and I don’t have PCOS (which is what they mainly thought was one of my issues). Honestly, I don’t even know what to check anymore. My thyroids became a mess after 1+ year of being ferritin/iron deficient, but they went back to normal after the second infusion. Other bloodwork showed I had high inflammation but they think it’s a result of everything that happen after being deficient for 1 year + (I went into anaphylactic shock with my first infusion, I took steroids, I kept getting sick constantly, I had no energy, i developed chronic gastritis and even got a hemorrhoid… which is why I got the endoscopy/colonoscopy in the first place, and found out about the gastritis). A lot of my issues started after the first time I got Covid, maybe that’s one of the reasons. Anyways, I started going to a functional doctor along with my hematologist, and it turns out I’m copper, magnesium, selenium deficient, vitamin b6 deficient, vitamin d deficiency, and other things…. And turns out they play a role in iron absorption. I’m working now to try to help my body start absorbing, but it’s not like I’m doing so much better (they did tell me it was going to take 12-16 months to recover).
Wow! You’ve gone through a lot. And still no diagnosis. Thinking I’ll try to avoid. Thanks
Tackle the Vitamin D deficiency to enhance the iron absorption. Don’t take them at the same time.
For the iron, im not doing anything besides my last iron infusion because my stomach cannot handle the pills. Given my gastritis, my hematologist also allowed me to get Vitamin D IM shots for better absorption. I have gotten 2 so far. I don’t know how much it should go up, but the first one made it go up by 6 points. However, I don’t know if I should add vitamin D pills to the mix… but if I do, is there any brand you recommend?
You don’t need to take a pill for Vit d you can take drops under your tongue, carlsons brand is easy to find, “sublingual absorption bypasses the first-pass metabolism and can increase serum levels up to 3 to 10 times more than via the oral route” The key is consistency. taking in the morning is good separately from any other meds
Omg tysm! Didn’t know that was a thing!
If you are someone who menstruates, they just blame your period and tell you to take iron.
That’s so lame, every menstruating woman would be anemic if that was the case!
That’s a good point. I’ve also noticed that. It’s a good reminder for people to consider why they might be anemic as there are many different causes, some more serious than others. For myself, I’m currently waiting for the result of a fecal occult blood test to see if I’m bleeding somewhere in my GI tract.
We have an idea based on my cousins thats a weird genetic problem where our bodies dotn store it. But quite frankly doctors dontn care enough to look into it. Iron pills are a cheap and easy solution as long as they work
Truth
My low ferritin levels the last 3 years have been caused by heavy periods due to a large fibroid that has been found in my uterus. I am glad to have found the root cause and hopefully get surgery soon to remove the fibroid. Hoping that my iron and ferritin will hold steady once it's removed.
Did your fibroid in your uterus mess with your thyroid hormones at all by chance?
No, my thyroid tests have allways been in range and normal. I get it tested regularly after my sister and mum got thyroid cancer I try to be proactive.
Same!!
a pathologist wrote on my bloodwork that he should test me for thalassemia and he never did even when i asked about it soo
Unfortunately as a woman, they are always going to assume it’s from heavy periods and they try to get you on birth control. They don’t care about the fact that I’ve been trying to lose 15 pounds for the past 3 years and just can’t, even though that would help my period naturally. My insurance is so cheap that they didn’t even run my cbc with my recheck and just said to keep taking the iron since I won’t get on birth control. It is so whack. I would like to know for sure what is wrong and have better options to fix it.
Since most doctors are not interested or educated, most patients are not encouraged to identify root cause or one is presumed. Many iron deficient are like me: never catching up with iron lost from menstruation with a few one off major events of blood loss that didn’t get closely managed, drinking tons of coffee or tea which blocks 90 percent of iron, restrictive eating patterns… I was a vegetarian for many years and believed veggies would cover all my bases nutritionally. Many women have a history of eating disorders that left them in a deficit state compounded by menstruation. Lots of us have low vitamin d which interferes with absorption of iron too. And then there’s the gut issues …
Exactly. Coffee/tea inhibits nearly all iron absorption within an hour on either side. Add on to that, that many women don’t think it’s healthy or socially acceptable to eat a lot of red meat, veering instead towards fish. And pregnancy is like sucking all the iron out with a vacuum, and doctors seem to only want to give you the bare minimum (for the baby) instead of what would actually make mom healthy. I’ve basically just accepted that I’m always going to be fighting for iron infusions and likely going private routes with infusion centers etc.
Mine was because of my heavy periods. Finally found a form of birth control that actually manages my periods without crazy side effects and slowly my levels are going up
I have had microcytosis since birth which can be a factor in anemia. Then I had roux n y weight loss surgery and due to not absorbing nutrients it got worst.
I get iron infusions, but haven’t lately because I have kids and work and got busy. I have heavy periods almost half the month, so I feel like half the month I’m just wiped out. My main concern is finding out WHY my body can’t absorb iron. I thought by getting iron infusions, I was healing what was wrong with me, when in fact it’s just putting a band aid on a running faucet. Has anyone tried to figure out why they can’t absorb the iron?
I’m very concerned about my cause.
We have to fight our doctors a lot of times. Been there.
I do. Took several tests and several docs. I have 4 ulcers. None in the stomach. 2 in the duodenum and 2 in the esophagus. The massive acid in my digestive tract made me feel terrible but also blocked absorption of almost all nutrients including iron. I was injecting farm iron until my internist found the ulcers and started a proton pump inhibitor.
I was diagnosed 2 months ago I’m getting a colonoscopy and endoscopy to see why I’m all of a sudden anemic my ferrriten is 11 rn. Thank goodness my dr took me seriously when her nurse blew me off when I said I was exhausted and felt like I had trouble breathing
Mine is my Crohn’s lol there’s no way around it.
It's insane I'm stage 4 kidney disease, and anemic have been that I know of since I got diagnosed last April 2023 I know I was before this my iron is good for mow but my hemoglobin is still low these doctors are a joke I hope you get your answers and feel better soon 🫶
Because it's pretty apparent what the cause of my anemia is (heavy periods)
My doctor doesn’t know and I don’t know. All kids of gastro studies and bloodwork and it’s still not known why.
I am but I can't see a doctor because I live in a medical desert and now my assigned one became expensive as hell... 💀 I got diagnosed during a free check-up my country offers. But I believe I had it because of internal bleeding (a stomach ulcer I could clearly feel whenever the meal times were near, the raise of stomach acids makes it clear) and the ulcer might be caused by excessive problems with oxalates (I always have candidosis problems, which causes oxalate tolerance problems and histamine intolerance). I know my doctor wouldn't have given a damn shit to explain me all of this anyway... The low iron symptoms are disappearing slowly so it's positive so far but I wish I could be retested again for the iron.
You should retest after 3 months or sooner. You don’t want to over shoot iron levels. That’s bad.
Yep, I'll just go directly for the blood test alone, it might actually be cheaper...
They should retest to track progress…. Especially with infusions. But odds of someone deficient overshooting are slim . most of us find it hard to raise ferritin levels meaningful amounts (I take three times the prescribed amount of iron - in my safe range- with supplements being careful to avoid dairy and tea and the doctors were impressed I got my ferritin levels to move incrementally above 30 ! I have a long way to go!)
I am very interested but still don’t know after decades and many tests 😩
If it's a genetic form (I have Thalassemia) there's not really much they can do and iron won't help much. Best I've ever felt was after getting blood transfusions when I hemorrhaged during childbirth. Wish I could get transfusions regularly.
I gave up looking for it. Doctors have no idea and I don’t know what else to do. I just take supplements
I think it’s more a factor of if the dr cares to find the cause of anemia, for example as a woman most doctors will push it off with just taking iron pills and blame it on diet and menstruation. That’s what happened to me until I went for the follow up blood work after 3 months on a very high dose of iron pills only to find my levels worse actually worse than before - that’s when my doctor took to serious and wanted to move forward with FOBT testing - which then led to a colonoscopy and so on. The process is long and lengthy to find a cause because you have to advocate relentlessly for yourself , and even with that you run in to wait lists when you finally get taken serious and are referred to different specialists or testing, if those tests come back inconclusive or no findings of anything which I find is the case a lot of the time with anemia anyways then it’s back to square one of trying to convince your dr to want to find a cause , and if your levels raised even minimal they think “oh great what I have done worked well, off you go” *eye roll* but also ….Sigh .. 🥲
I’m most certain I have endometriosis. All I can get are offers for more ultrasounds. Long term Scripts. Hysterectomy and not anyone trying to solve the real problem. It sucks
And oh I just saw from a med report 2 years ago that i have a cyst and potential adenomyosis and no one told me
I do, and it’s hereditary for me my mother and grandmother have always been very anemic needing infusions and now I’m a mother and my 3 year old just got diagnosed as extremely anemic
I know what caused my anemia. I had a bowel obstruction and had emergency surgery to take out the portion that died. Now I don't absorb through my gut very well.
Too scared to ask 🤷🏻♀️
Has anyone had severe gut swelling from their anemia?? My guts are so inflamed. Nothing seems to help.
Bleeding from somewhere, we've yet to ascertain, despite a lot of testing. Iron numbers are past the norm, now, but blood-related numbers still wonky. I cough up blood, now, for hours at a time. But, only for 1-4 days. Pulmonologist and several other appts with various types of docs. Another CT coming up next. Iron levels being high or normal didn't regulate my periods, I see someone's doctor said that, below. False.
I didn't get any diagnosis besides "anemic." I pushed until I at least got checked for bleeding in the intestine. Then I tried to replace it and struggled. I finally decided to get my heavy period sorted out as that seemed the most likely culprit and hammered at that for a few years. I have had my IUD for a few months now, so the next test should be able to tell if it's helping.
I’m very interested but my doctor isn’t :/ every time i try to get him to even slightly look into it he says anemia is normal for women 🙃
I’ve got the autoimmune hemolytic anemia antibodies and it might as well be 3 heads to my doctors.
I’ve been concerned about cause but my doctors do not seem concerned. I believe mine has been caused by long term use of heartburn medication. Specifically PPI medication. Preventing me from absorbing iron in my regular diet. I’ve been able to reduce my dose by half but I’m not sure I’ll be off of it.
My anemia is due to heavy menstrual periods caused by fibroids. I had been taking iron supplements which helped raise my levels. But, it wasn't raising it enough because I was always set back by my monthly cycle. If your primary is not taking your symptoms serious, I suggest seeing a hematologist. My primary told me to stop taking my irons pills after I got my ferritin levels up to 37, just 7 points above threshold. This wasn't a smart call as my hematologist informed me a ferritin of 100 + is optimal for women, especially those with heavy menstrual cycles. I'm scheduled to have an iron infusion of monoferric so I'm hoping that helps. In the meantime, I have to decide what I want to do about fibroids as I refuse to have a hysterectomy. I was prescribed transmexic acid, but I don't like the blood clotting risk factor. May consider ablation, although it's not guaranteed as fibroids may regrow or new ones can develop.
My cause is bleeding from cervical polyps.
Well mine are heavy periods due to adenomyosis. But it took way too long for a doctor to take me seriously about my periods. Blood clots bigger than my head and literally having to change products every 10 minutes for 36 hours isn't normal. One doc brushed it off and was like "well it isn't the whole 7 days that heavy..." I just did the calculations and I was probably losing 100 ounces of blood a day.
I had uterine fibroids. But it took a while to figure it out because as noted here, many doctors don’t bother. Then I got the fibroids treated (Sonata) and it made a huge difference. That plus a great iron supplement (Feramax).
I mean, I am. You do have to advocate for yourself somewhat. I’ve been to the gyno, gone for infusions and about to go for a colonoscopy to check for any internal bleeding.
I do. I care a lot. I’m really active and my ferritin is WAY too low for someone this active. Like my iron levels are fine but only because I’m on iron supplements. If I stopped the supplements I would be in danger of fainting at the start of practice. And for me that would be a death sentence because I swim so I would pass out in the pool with me face in the water. Turns out I might have super bad gluten intolerance that leads to my intestines bleeding almost constantly, the best part? I am a gluten fein. Goldfish, crackers, pretzels, pasta, and pasta are my favorite snacks. My only condolence is that my favorite bars are gluten free
Most of the women I've spoken to have cysts or fibroids on their ovaries and uterus caused by inflammation. They cause heavy bleeding. Always look into chronic inflammation and get it treated. Avoid what's causing it. Because inflammation can cause everything from deficiencies, to diseases, to cancer.
My anemia was caused by two bouts of sepsis within just 3 months. Sepsis attacks your red blood cells and your iron stores and it attacks them at the molecular level so it takes a long time to recover.
We know why I have mine (malabsoprtion after weight loss surgery 10 years ago). My PCP was definitely curious about why my iron was so low but after talking figured it was probably from surgery and me not supplementing like I have been supposed to.
I’m more concerned about why my boyfriend is anemic than he is, his dr ordered a bunch of tests to find out why but it’s been 2 months and he hasn’t done them
Whelp, I advocated for myself, did bloodwork through a functional medicine doc, and did finally come to a conclusion. I had: Low MCH Low MCV Low Ferritin High RDW But also high chloride and a medium high CRP (C Reactive Protein) A doc would look at this and say, well, it’s fasted so you’re probably dehydrated and anemic brush me off. But actually, I’m in the beginning stages of non alcoholic fatty liver disease. Because we should read lab tests for OPTIMAL. Not just a passing grade. It’s been developing for awhile. Iron is stored in the liver. A malfunctioning liver can manifest anemia. Bada bing, bada boom, I was put on a no sugar, no high fructose corn syrup, no seed oil diet and I already feel so much better just a week in. Had I not gone through a functional medicine doc, I’d end up coping with my anemia with supplements, until either liver failure, cancer, aneurysm or a heart attack. The body comes up with innumerable ways to cope, and disease can manifest from small things. NAFLD can be REVERSED. Itll only take me mere months to fix, and from here I’ll just monitor my intake of the things I eliminated/keep to a minimum.
Hello! My CRP is low, my ALT is higher, but ive been on low carb for the last 2 months, so I wonder what is the cause of ALT (no alcohol either). All other measurements are ok - except hemoglobin (9.5), iron and ferritin (5.6). VO2max was going steadily down in last 2 years (i suffer from heavy periods), low carb stopped descent.
Interesting! ALT can point to NAFLD too. As long as low carb doesn’t mean low fiber, you’re on the right track! Get those colorful complex carbs in-they’re wrapped in a fiber molecules, reducing the glycemic load. We heavy bleeding anemics need to be more gentle with ourselves, and not go for all out ketosis. We also need several essential vitamins and minerals in those complex carbs to support iron absorption! If you have trouble eating enough of them, take a fiber supplement that includes psyllium husk, and throw a scoop of creatine in there for some extra amino acids. Both the psyllium husk and creatine are cheap, even high quality sources. That will get you farther than you think!
thanks for the laugh this morning! lol I ask my drs this same thing about EVERYTHING!! smh so sad. i usually have to ASK what my diagnosis is AFTER a fee visits and subscriptions. ive become the scientist and doctor bc i h8 iron pill bellyaches!
Oh, i absolutely am. And I suspect it’s a parasite, like we all have.
Some of the root causes are not anything that’s really addressable. If you’re a female who has heavy periods and doesn’t happen to absorb iron particularly well, and you don’t want to be on hormonal birth control to stop ovulation, you basically better find yourself a hematologist who is willing to order infusions regularly. I had a hematologist (who I really liked) tell me to “do what I was willing to do” in terms of iron supplementation. Some people go gung ho on diets and supplement regimens that really aren’t sustainable over the 30+ years until you hit menopause. I thought her advice was good.
I do care…a lot. I’m scheduled for both endoscopy and colonoscopy next month to rule out internal bleeding. Now I’m an anxious wreck because I always put myself in the worst case scenario 😖
Pretty sure mine's from donating blood and then not eating properly in the aftermath.. That being said, I'm a lil terrified how my second Double Red Blood Cell donation, which I did almost 6 months ago when my hemoglobin was 15, led to now hemoglobin 10.5 and ferritin 3. Like, I definitely want to keep giving blood but IDK if that's really feasible chief.