My Iron Infusion Experience For Ferritin Deficiency! 💉
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- Опубликовано: 10 сен 2024
- Recently I had 2 iron infusions for my ferritin deficiency/iron deficiency anemia. My hemoglobin levels were actually NORMAL (thought they are low sometimes), but my ferritin level has been low for many years despite taking iron supplements.
Unfortunately, doctors often miss low ferritin because the lab ranges tend to be around 12-200+, when it is actually recommended that ferritin levels in the presence of chronic illness/fatigue should be above 50 or even above 75! (Recommended by the Mayo Clinic as well as my sleep doctor)
Over the years, my ferritin levels have ranged from about 6-25, which is much too low. I am optimistic that these infusions will help!
I hope that more doctors will start recognizing low ferritin, as it can cause significant symptoms and often is a relatively easy fix!
I was given Injectafer (inferric carboxymaltose) along with IV saline and zofran. There are different brands of IV iron!
Have you had an iron infusion? Tell me about it!
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#IronInfusion #ChronicIllness
How are you feeling after all this time?! It's wild how often low ferritin levels are dismissed if your hemoglobin is normal. Ugh. My doctor wrote me off at 10ng, and I tried to convince me it was "just anxiety" despite having all the classic symtoms of ID (three years of chest pain, palpitations, sleep disturbances, extreme fatigue, etc.). It's SO frustrating. Thank you for sharing your experience. I really hope other low ferritin people find your video and feel empowered to advocate for themselves!! I know doctors get testy about "google MDs," but we know our bodies best, and they are sometimes blinded by average lab values that offer little/no insight into what their patient is actually feeling.
What's ID??
@@TheStepmonkey Iron Deficiency.
How did you got better with low ferritin?
So true mate. Most doctors dont know their shit.
I’m having my 1st infusion in the morning. Currently, my Ferritin level is at 3, and my Hemoglobin is 6. I’ve been feeling horrible for so long, so I’m just really hopeful that this helps me in some way.
Thanks for sharing your experience!
My ferritin is a 3 also, how was your treatment?
I'm having mine next week. How are you feeling?
How r u today
@@kissthatlifeaway How was your treatment? I’m so nervous.
How on earth did your doctor allow you to get to a hemoglobin level of 6??!!
My ferritin is 4.... and the first doc i went to didn’t seem too fussed! Second doc was like “you need an infusion, see you tomorrow” ... in I go this afternoon!
My ferttin was at 4 too but my doctor put me on iron supplements pills. After a month of taking them every other day my ferttin went up by 2. Now it’s at a 6. I want to get the infusion because my hair is falling out and I feel as though the pills are going to take a long time to get my ferttin up to where it would stop my hairloss. Did you also experience hairlosss and did your insurance cover the cost?
Also what is your ferttin level now?
@@cookincookie My ferritin was at a 3. It took a year just to raise it to 14 on iron pills. My hair thinned out so badly. So I’m going to ask my doctor about getting the infusions.
Ive been in the same boat for the jar 3 months but my insurance didn’t cover it. I saw a recipe for an anemia smoothie but that’ll take time to see improvements I hurt everyday with each day getting worse my legs hurt at night nite my arms and my hair is thinning and falling out badly
my ferritin is 5, and it has been for three years after it bumped up from 4...iron pills completely ruined my digestive system so i guess it's transfusion time ^^;
Anyone here experienced constant headaches and sore scalp with low Ferritin?
Yes I have been getting that.
Yes I feel that way constantly and my most recent test showed 8.8 ferritin.
Mine is currently 5, but I’ve been on tablets for two months with no effect, my fatigue and headaches & nights sweats are insane
Yes. My ferritin is 9. My doc called me yesterday. We are talking infusion...
Yes! My ferritin is in 5 now and about 2 weeks ago I started with horribles headaches. Tomorrow I'll get my IV infusion 🙌🏽
Prayers & Blessings to you strong One.
Embrace your journey and all will make sense.
Broken bodies are sometimes houses for the most beautiful souls.
🙏🙏🙏🙏❣️❣️❣️❣️
This is so helpful, It has calmed my nerves about going. I've had low iron for 3 years, finally getting an infusion and my doctor thinks it could be Celiac Disease. Hope you feel better now.
I'm so glad I found your channel! I'm having my 1st Iron Infusion 3-23. My ferritin is 9 and hemoglobin has been between 8-10 for 3 years. Thank you for sharing and hope you are doing well! ❤
Mine was last at a 8 or 9 and i’ve had fainting spells/dizzy spells for years but was just recently diagnosed with anemia. My symptoms are so horrible too
@@sarahmcelroy5016 That's so sad to hear. Doctor's should have caught this.
How are you feeling now?
Did you find a solution? @@sarahmcelroy5016
I get iron infusion too. My energy increases within a few days of getting the treatment.
I'm actually going today for an iron infusion. My ferretin level is 15. And after reading all the comments, this explains why why I have felt so crappy over the past couple months. I'm hoping this helps get my energy back.
how has it helped you? i hope it has been amazing for you
Please share your experience. Mine was same level and I’ve been seriously fatigued, nauseaous, and dizzy the last month since I had a cyst rupture and bleed into my abdomen. That made my blood and iron levels drop a lot! I’m waiting to get an infusion bevause everyday has been a challenge
How are you feeling today? I hope you found a solution!! I am sorry you went through that!!@@kurlykaitlyn
What you did for cyst ? @@kurlykaitlyn
Wow my ferritin level is 1.4 No wonder I feel like garbage. Thank you for the upload I'm having this particular infusion done next week and I was wondering how it worked
Mine is 1.99 and Im fine except some nights when I have palpitations and I couldn't sleep.
How was your experience after? How many infusions did you need? I hope everything went well. ☺️
i’m finally getting one. my ferritin has been at a steady 3 for many years now and nothing has been able to keep it up. let’s hope this works!!
i hope it works for you!!
My ferritin is a 1, I have my 1st infusion on Monday.. I'm nervous
@@amarie_love8923 mine first is one Friday.. how did you do?
@@Ela-eh3hm sorry for the late response. I had two infusions, my 1st one I broke out in a bad rash the night after, took some benadryl and it went away. My second went fine. My Hemoglobin has gone up from a 9 to a 14.2, so they worked 👍🤗 .. how did yours go??
@@amarie_love8923 what did you do to prep for the day of infusion? Any side effects during or after the iron infusion?
Thank you so much for posting your experience. My ferritin has been at a constant 1-3 on my labs for the past 10 years, and pill iron does absolutely nothing for my symptoms, liquid iron is only barely making my symptoms manageable. I’ve had fainting episodes, especially in the morning, constantly tired and drained and just ICK since high school. I have finally been seen by a hemotologist and I’m so excited to see if this infusion will TRULY help me!!!
Hi there, Does it help? Hope u don't mind sharing.-/\- I m making decision to have iron infusion or not. -/\-
It is crazy how people with extreamly low iron have the same symptoms as people like me that has extreamly high iron (hemochromatosis ) I was 36 by the time a doctor finally did a ferritin test on me and my result was 1900. It took 7 months of weekly blood letting to get my number down to 70 to 100.
I suffered for years not knowing what was wrong with me. Im glad you were able to find out what was wrong.
Now that iam carnivore I go every 90 days to donate blood and all is good.
I go for my 6th iron infusion tomorrow. My biggest side effects are my hands and feet swell up after the infusion and I get really bad back and chest pain I’m also very tired after.
Thank you for posting this video! My iron levels follow a similar trend; my hemoglobin is normal, but my ferritin has always been between 4-12. My doctor last year actually told me it was fine not to take supplements because my ferritin increased to 6 which is "within normal levels". I realized I needed a second opinion. My currently endocrinologist (without my asking) suggested I do an IV, and I have just gotten a script! You are absolutely right, it seems ferritin levels are often overlooked, when we may experience all the tell-tale symptoms of anemia!
They are and it’s so crazy. I did self labs and found this out myself.
How are you feeling now dear Christina?!
This has been me for years. My ferritin level can get extremely low 8 my normal is 12, and when I’m at 12 my doctor always says you’re fine you’re in the range until I looked at my own bloodwork realizing I’m at the lowest end of the range and it explains all my side effects. I’ve been having shortness of breath, dizziness, fatigue, brain fog, hair loss, no energy when my doctor passed away I got a new doctor and she said my ferritin is extremely low. It should be in the hundreds and I’ve tried every tablet you could think of not taking dairy while taking them taking vitamin C with the iron and it always stayed at 12. So now I’m looking into iron infusions and was trying to see how other people felt after having them. I was told so many have this burst of energy and they feel amazing and people feel that from the iron pills but I’ve never felt that I don’t know what it’s like to have burst of energy. 😂
@@ceciliamac4283haha well I am back to having low levels and need to bite the bullet and take the pills. 😅
Unfortunately I had an allergic reaction at the end the first infusion (very rare apparently, lucky me haha), so I was never able to experience the full effect. After being wheeled off to emerg I was told I wouldn’t be a candidate for iron infusion anymore. My levels did skyrocket after the first transfusion however-amazing-and it took a couple years for it to return to where it is now.
The actual process of getting the IV was straightforward and comfortable though! Before the reaction anyway lol.
@@christinap802 Thank you for your reply. I am sorry to hear that the levels are low again. I learned recently (and I started taking it) that lactoferrin is helpful (it’s what transports the ferritin to where it’s supposed to be before some pathogens in our digestive system get to it (they live on iron)). I take one capsule before going to bed. I also started taking Kadi Patta (curry leaves powder in capsules). I bought it from a company in France that makes very natural supplements but maybe you can find it in the states 🇺🇸 or where you are based at. I also cook few times a week in an iron skillet and that helped me just don’t over do it like I did at first because it just was a bit too much iron and I felt a bit dizzy for some reason. After just two months now, my ferritin went from 8 to 22!! I am so happy even if I still feel exhausted during and right after my periods but nothing like when I was at 8. I Hope this is helpful!! Also, make sure to cook the spinach and don’t eat it raw as it contains oxalates which inhibits absorption of vitamins and minerals and when you cook spinach it gets rid of the oxalates and just add few drops of lemon juice for oxidation of the non-heme iron contained in the spinach (if it’s not oxidated it won’t be released). Non heme iron is all the type of iron that doesn’t come from meat, and for non heme iron
to be be used by our body it needs to be broken down so to say and what does that is either lemon or a bit of vinegar. If you eat lentils, same. Add a bit of lemon or vinegar and put that in a mixer/blender. Lentil paste is much better as far as iron then just plane lentils. All about breaking down and releasing the non heme iron and helping the body to get the most of it because it’s not as bio available as the heme-iron.
IV been getting iron infusion for three times and I'm full of energy. It really helps . Only thing is I feel sick to my stomach . Every now and then . But it work's for me.
How did you descover that your iron level is low?
@@GeekyViky thru the liver institute.
I had 8 visits to the institute.
@@raymondgonzalez5535 gotcha. Thanks
how long did it take before you started feeling normal.....30 days? 60 days? How long did it take for your hair and nails to start growing again?
I’m getting my first treatment tomorrow and I was a little worried on what would happen to me after…but your video helped to ease my nerves.
You’ve got this!! Hope this makes a difference for you ☺️
Hey, can i ask this infusion caused acne to you ? Because supplements have an effect of causing cystic acne to me. I wanna know if it would be the same with the infusion?
@@zepriana7406 Hello! I didn’t notice any acne with my treatment. I will say, I rarely get acne
I just found out my level is 6 too and I might need an infusion. Thanks for the videos
Best of luck, I hope the infusion helps!!
Kate Pattenaude i just got mine today and mine is an 8 and my doctor says i should take 100 mg a day and like a normal supplement has 8mg smh
I just found out on Monday mine is 3.5, and my doctor just put me on a chealated iron and vitamin c and B12 injections. Should I be worried that’s not enough?
Realizing my fatigue from iron deficiency anemia was missed for literally years, maybe decades... getting my infusion in two days. Thanks for the video of what to expect!
@@gillianmorton2549 hy did this hlp you??
Hi did this work? I have had low ferritin for years. I am literally tired of being tired.
Im really sad. I did the iron infusion and now a couple of months I am experiencing sudden hair loss. I am very afraid that it won’t work for me
Hope you feel better & have more energy now! Thankyou for the video, so informative, I'll be in tomorrow for infusions🖤
my iron infusion is tomorrow in the morning! i am very nervous so please pray for me.
My ferritin is 110 and my hemoglobin is 16.3 I feel really, really good
My ferritin is currently 4.3 (iron: 3.1 and haemoglobin: 87) and all I got told was to change my diet....
Hi! I stumbled across your vlog as I was searching for vids on iron infusions and found it to be really helpful. I have low ferritin and am getting my first iron infusion in a few days so I wanna be prepared! I also have POTS, EDS & comorbitidies. Just subscribed!! Lots of love 💜💖
I’m so glad to hear that! Thank you Claire 💜 Best of luck with your infusions!!
I too have POTS, GERD, ulcerative colitis and past history of cancer. I was so blessed that my oncologist checked my iron level two days ago in clinic and found that I'm only at a 17. I definitely seem to have many many symptoms that have been awful these past two years due to a combination of the POTS and iron deficiency. I go in for infusion treatment next week and my doctor says I'll have an eight week treatment. Praying that I'll feel better from this!
I have EDS and POTS too!
@@hannahstovall2625 hi fellow potsie/zebra!!
@@hannahstovall2625 How did you get diagnosed, by what kind of doctor? I’ve been sick for years and no one will diagnose me.
I just tried to do Infed today, but failed the first test. They are going to try another brand for me in the future. How are you feeling now? Did the infusions help? Like you, I am just low in ferritin. Mine was 20, but has gone lower in the past. I'm tired of struggling with it.
Hi how long did it take for you to see hairloss reduction.symptons?
How long did it take you to feel better after infusions? Days?
My ferritin is 4 right now and had a blood transfusion last month due to hemoglobin of 6.8. I will be going for my iron infusion later.
I get mine tomorrow for the first time. Thanks for ur vid . I feel a lot better about getting it done now! 😊
Good luck, you got this!!
Did it hurt?
@@ToniBallTheRealtor835 It didn’t. It went fine thanks to God🙏🏼
@@HealingWithRachael 😊
Hey, can i ask this infusion caused acne to you ? Because supplements have an effect of causing cystic acne to me. I wanna know if it would be the same with the infusion?
What’s the root cause of your low ferritin? Mine is 7 and I fell like crap. I can opt for the IV iron infusion but would like to know what’s causing it because 3 years ago I went through IV iron infusions and I got a lot of side effects so I’m kinda scared. What else can I do to fix this? 😢
I'm not sure the cause of my low ferritin, likely from malabsorption issues (I have celiac disease). There are certain types of oral iron supplements that supposedly absorb better (VitronC I think is one), as well as cooking with a cast iron pan. But for me, those didn't work and I needed the infusion. It really wasn't bad at all, though!
Ruth Salinas hi, Ruth. What were your side effects? I have iron deficiency anemia (due to heavy periods) and I have to get a second set of iron infusions. My first was earlier this year. I got Injectafer. My only side effect was coughing and chest tightness, but they gave me a premed for the 2nd dose and I was fine during that. Now my insurance won’t cover Injectafer, so I have to get Venofer (which is a longer infusion and twice as many treatments) and I’m really nervous about negative side effects.
@@SweetnSourqt3 How are you doing now? Have the injections helped you? I have heard negative things about injectifer and I'm a bit scared to get one..one side effect could be death...my goodness.
Hi.did you experience irregular heart beats .extrasysyoles i have these symptoms my ferritin test is 3 with anemia ?
Yes I have irregular heartbeat, mine is at a steady 9 for years
I just got tested and my ferritin is at 5 😩 Fighting to get IV iron... so tired of feeling like this.
Mine is at a 5 too! Doctor won't let me get the IV...:( Said it wasn't low enough? I'd rather just instantly get the IV than have to wait 6 months for the iron tablet to kick in.
I'm so sorry to hear that! I hope you find a doc who can help you. ♥️
Hey, can i ask this infusion caused acne to you ? Because supplements have an effect of causing cystic acne to me. I wanna know if it would be the same with the infusion?
The doctor just recently told me that he recommends that I get an iron infusion for my anemia after my ferritin level showed up as a 6 on my blood work. I was scared about it, but now after this video i think I will go ahead and get it done.
Have you done it? I had mine today,in a week,I'll go for the second one
@@jeccym8715 Yep! I've had two iron infusions! The whole experience was relatively good and I wasn't scared at all!
My level is 7. I am so weak. So so weak. It gets worse with each period. My head is killing me and my legs tingle each night. I'm miserable. But my doctor doesn't believe this is even an issue. Im so frustrated. I've had countless blood tests and this is the first time they even did ferritin and I knew nothing about it. I want an infusion. I can't believe how doctors don't care. Luckily I'm going to Mayo. But I'm even scared they won't believe me. It's so awful
Good luck with everything! I have a friend that went to mayo and had an iron infusion there with a level of 25 or so. In their articles they say they prefer it to be over 50! So hopefully they’ll be able to help!
Yes Doctors don’t care unfortunately
I am going through exact same thing and hope you are better. Its such a horrible feeling
@@p11490 I went to Mayo and got infusion there, then got my hematologist at home to finish them. The infusions made me way worse at first, but I think it was because they were high doses that threw my body off. It took 3 months to finally feel good again. I also found some groups on Facebook and did some research and have been supplementing with vit D and magnesium. My irons deficiency symptoms are practically nothing now. My GI issues have gotten worse. Idk if there's connections, but others I've talked to had gut issues after infusions. The iron protocol fb page taught me a lot and I feel knowlegable on what to do if my ferritin drops again. But getting my ferritin up was life changing. It was indeed the cause of all of the symptoms I suspected it to be causing (restless aching legs, shortness of breath, extreme fatigue, muscle and limb weakness, heart palps, general feeling of off, dizziness, cold, tingling feet, mood issues/stronger depression). I'm so much better now.
Ali sue where is mayo? Were you getting heart palpitations when sleeping or with heavy lifting or going uphill? Im taking Iron but scared it is too late. Any side effects with iron infusion?
I’m in the same boat.. hemoglobin is low end of normal, but my ferritin was 5. I started taking oral iron supplements (per dr’s recommendation), and trying to eat iron rich foods. After like..3.5 months, it went up to 13. It’s been about 2 months since I’ve had it checked, but I’ve since had to stop taking the oral iron. Without going into too much detail, it has been super super rough on my stomach. I’m seeing a GI doctor this week for symptoms of IBS to see if that’s what’s causing this. I wouldn’t be surprised if my iron has gone back down, especially since I’ve been even more tired recently. I want to suggest iron infusions as an option to my doctor, but I’m not sure if I’m a good candidate for it/if my iron level is bad enough.
I’m sorry to hear that Catherine 😞 I bet if you can find a doctor that understands you can’t tolerate oral iron/that it doesn’t raise your ferritin enough, they would be willing to try infusions. My ferritin was at 10 when I had my infusions! Good luck! 💚
Look up the iron maiden blog by Leona shes a nurse specializing in patient blood management and she's got educated information on the type of iron supplements we should be ingesting to avoid upset stomachs.
anu ojo thanks! To update y’all, I actually sorted everything out, saw all the docs, and got an iron infusion a couple weeks ago. Probably too soon to see results, but I’m glad I got it taken care of. I totally felt dramatic at first, like other people are so much worse off than I was, so it was nice to hear from a Hopkins hematologist that I absolutely did need the infusion :)
@@catherinebeckyclaire How are you doing now? I got my blood tested for ferritin because of the hair loss i’ve had and i found out this week that my ferritin level is at 4. My doc didn’t seem too concerned and recommended me to take 200mg iron supplements a day for three months.
@@iiriss7435 I ended up getting an infusion! It was super easy, and brought my levels right up! Based on the dose I got and my size, they projected my ferritin to go up to around 400 after 3 weeks... and it did only go up to 176 which they were a little confused about. But I did gradually start feeling (and looking) healthier/ more alive haha.. But yeah, my stomach couldn’t tolerate the oral iron at all, and my hematologist said even if it could, getting your levels up from 4 with just diet and oral supplements would take forever if it’s even possible. I totally recommend trying to get an infusion if you can! I have a follow up next month to see how much of the IV iron my body’s gone through and tbh.. I have a feeling they might want to give me another infusion. I’ve very recently been noticing some symptoms again, like feeling sluggish, craving sweets/ things that aren’t super nutritious, and feeling lightheaded in the shower. We’ll see.. but good luck to you!!
Do they have to put a permanent port in ? My ivs tend to be difficult and i am looking at a 5 weeks of infusions.
I tried getting my iron infusion yesterday. My ferritin levels are very low and I have thalassemia trait. The combination of two has been leading to very low hemoglobin. I am scheduled to go through a major surgery coming month, so the doctor wanted to up the iron content. Hematologist asked me to get at least one dose of iron infusion. I had a bad intuition about it, but decided to go ahead with it. I was told the severe side effects are rash etc. I wasn't told that one of the side effects could be anaphylactic shock, which is life threatening. The probability of this side effect is extremely low. Within a couple of seconds of it starting, I started getting chest pain. I rang the bell. Another second passed and I had gone into a shock. I thought I was getting a heart attack. My body was shaking and I could not breathe...breathing was very labored and heavy. It felt like someone is squeezing my chest from both the sides. I was getting an anaphylactic shock. Thankfully, all of the nurses, including the head nurse, quickly got into action. I got saved. A few more seconds and I would have died. Nurses tell me that my face was very red. After 24 hours, I still have labored breathing and a numb hand. Of course, my case was recorded and would go to FDA. But, I thought I should share it. Do it only if you really need it. Try taking a massive dose of supplements, even if it makes you feel sick. I know the probabilities are really low of getting a shock. I got Feraheme (costs about 4000 bucks a dose; covered by my insurance) . It is supposed to have really low risk and yet I had a near death experience.
@jennifer3708 Look into The Root Cause Protocol. It will explain and answer questions you may be having at this point.
Gosh that is awful. My ferritin is borderline low. Tried otc supplement n landed on the cardiac OBS unit. I had chest pain with sob . Have been told to try ferrochel ? Not sure it's worth it. Have had too many allergic reactions in the last year. Hope you have fully recovered from your experience.
Sorry you had a bad experience with feraheme. Just in case anyone else reads this I did not have any side effects to my 1st dose of feraheme. Hoping 2nd dose goes well.
@@altimablackberry How did 2nd go?
I will only get Venofer IV iron. From all the research I've done over the years, this one has the lowest risk of allergic reactions and side effects.
Hi Rachel. Any side effects during the actual infusion? Wishing you continued improved health.
Not really that I remember! Body aches afterwards.
The most bioavailable form iron is heme iron, which you can only get from animals (specifically liver and blood). Try eating more rare to medium-rare liver.
With the heme irons are there precautions they can take to insure it isn’t tainted with the prion that causes the mad cow type diseases? It’s still out there and my mother actually died of it in the late 80’s. Have you looked into it or was it explained to you? My ferritin is currently 9 and I feel like heck. I’m taking 300 mg of poly iron twice a day ( I do have malabsorption due to weight loss surgery) but it’s a lot..
A possible mechanism by which central obesity has this effect on iron status could be its association with systemic low-grade inflammation [30].
The sex hormone oestrogen is strongly associated with body fat distribution and directly suppresses hepcidin [32], possibly to upregulate iron absorption to compensate for that lost through menstruation.
Your estrogen is ruined, get chromium to raise estrogen precursor issues by resolving insulin-sensitivty
Molybdenum chelates iron into the blood and corrects animea
Get methyl folate and methyl cobalamin to
Lastly the systemic inflammation responds well the homocysteine regulators - thats the coenzymated (and methylated) B vitamins - p-5-p , methyl folate and methylcobalamine - zinc and trimethyl glycine
Get molybdenum and chromium
Chromium is the only one you even need, the rest are likely unnecessary and get chromium from the best brand you can
The viatmin b9 and b12 (i.e methylfolate and methylcobalamine are the second most important, as if molybdenum, which will raise ferratin).
I had two iron infusions, each one week apart, and that was 45 days ago and I am NOT feeling better. My hemoglobin started at 6 and after the infusions it was at 12. My iron level was also in the normal range after the second infusion. But my hair and nails are still NOT growing. I am NOT feeling better yet. How much longer will it take? I had severe chronic anemia for months before the infusions.
Search in Facebook for the Iron Protocol with or without Anemia group, it has helped many of us, you'll get more answers there.
I also did infusion. But after 1 year again it became low 😢😢
My serum ferritin is 36 only ...and I'm taking iron supplements but it's not helping and I am experiencing hairfall too...how is your experience with ferritin injection...what were the problems before and how do you feel after taking it..
If i may ask, have u experienced tingling in scalp after waking up? Appreciate your answer very much
I do have this symptom!!
@@zararezaye2474 Thank you for your reply,, but do u know why? Or what is the cause?
Hi. I just found out my ferritin level is 10. What kind of specialist do you see for low ferritin? I need to make an appointment and get an iron infusion.
Hematologist
What were you able to get your ferritin up to ? Did this help you ?
I’ve been very ill and housebound with unexplained symptoms for the last 3 years and found out my ferritin was very low last year - at 7, was only able to get up to 23 ferritin supplementing so currently going through infusions. Curious if you were able to get to the optimal range 100-150?
How were the infusions?
When you say the iron is given with fluids, can you expand on that? Like, they provide you with water or what? Or do you mean IV fluids to keep you hydrated as the iron goes in?
My Ferritin Level is 16, But my iron levels are normal, bhai i have unbelievable amount of fatigue and weakness im mostly absent minded and my body aches, is this all because of low ferritin? please reply on this Im just 20 years old
Same, with regular hemoglobin. But also more symptoms, getting iron infusion this week. Try and get one.
I’ve struggled with iron deficiency for more than 30 years. Now I’m dealing with a lot of hair loss & found that my ferritin is 14. I’m consulting with a hematologist soon. Overall, in the long run, did the infusion help you? And how long did it take to get ferritin levels back up?
I’m sorry to hear you’re struggling! The infusions have finally gotten my ferratin levels in a good range, yes. I had it done right before a major surgery so it was hard to tell if it helped, but maybe it gave me a boost in my recovery. Unfortunately overall I’m not really doing much better but my iron levels are normal and I’m thankful for that! Good luck with everything.
Rachael Elizabeth thank you so much for replying
@@HealingWithRachael check your b12 , folate and vitamin d level too.
Does anyone have crohns or celiac. My 15 yr old has low iron at 2
Its very low he needs this
May I ask how much iron you were taking before the infusion?
I am currently on iron infusions bc my ferritin level was 8. I hope this treatment works because I can’t imagine feeling much worse than I have been lately 😔
Hello all, thank you to creating this youtube channel. I have Ferritin 2, hemoglobin 9.1. Please advise me is it ok for me or should i do something. And what is the complication of low ferritin?? Thank you
You did something??
I've been battling iron deficiency since I was 19...just turned 39 last week...I don't have medical insurance, so it's a difficult battle. I've been trying to self manage by taking over the counter iron pills, but am finding out that my problem might be more severe. After getting some lab work done, my count was at 3...needless to say, an ambulance was sent to my house and I was given an emergency blood transfusion.
I can't tell you the difference...I was like a brand new person. I could touch my toes and stand back up immediately without blacking out, fainting or feeling my heart pounding in my chest.
It's been a year since that transfusion and my iron count is back to low numbers, though this time it's at 5 instead of 3....so some progress? lol
Iron infusions are my next step...I go in for my first one Dec 9..I so incredibly hope it fixes the problem.
Thanks for your video...for such a common problem, there really isn't much known about why this happens.
I hope you are feeling better!
I’m going to get my iron infusion done soon too but I managed to increase my ferritin with pills from 30 to 50 within a month but you have to take a high dose! One iron pill a day won’t help much! I was taking 1 pill of 36mg of iron bisglycinate 3 times daily on empty stomach with orange juice. Iron is not easy to get absorbed from pills so make sure it’s an easy to absorb form like that one I took and you have to take it on empty stomach (first thing in the morning- one hour before meal. Second dose two hours after the meal and one house before second meal etc). It will take time but it will help.
@@MW-ob8jm I appreciate the advice, but I think I'll stick to listening to my doctor. Best of luck to ya.
What were your symptoms?
Did you have heavy blood loss internally or during your periods? If not that's strange for your iron to keep dropping like that. How did you infusion go?
I have had an infusion today. Actually got my iron up a little by 7 points in five weeks with red meat and heme iron supplements. Just leaving this for those who also suffer.
Thank you for the video, I am 10 years anemic without any treatment until today.
Iron, ferritin, b12, d3, and my rbc, wbc, hemoglobin, hematocrit, creatin levels are so very low. I have had all these odd major problems, gastric bloating, nerve pain and weakness in my arm and shoulder, restlessness at night. I have
Come to understand these could be all due to the anemia. Had my first Feraheme infusion today with the saline and Tylenol, the stomach was ever so slightly on edge without any zofran but really it was very tolerable. Oof, I am hoping to feel better fast, at least exhaustion and low feelings.
@foremasp, how did the infusion go? Has iron level gone up?
Yes, iron levels are high, and I have had 3 more infusions now, all blood work trended upward. There remains some concern about my bone marrow but it basically remains a classic anemia situation.
Why don’t you tell me more about yourself and medical history, illnesses, knowing these things, maybe I can share with you more specific details that could be helpful.
I wish you you all the best, even if I don’t hear from you I, I’ll keep you in my good thoughts.
-Scott
My ferritin is at 12.4 and I’m experiencing acid reflux and heartburn, acne on my face and chest and many other things such as fatigue and anxiety. My hemoglobin is at 13 so its normal. But could my symptoms be caused by low ferritin? I’m extremely annoyed by the acne as its been a year and I’ve tried everything and my face hasn’t been clear for an entire year. And let me not start by how my doctor is dismissing this thought and telling me to see a dermatologist instead. I’m 26 I know very well how my skin normally is; this definitely something from within that is causing my acne. I really hope if anyone can tell me if they experienced the acid reflux and acne symptoms
You probably have H pylori that causes stomach problems and poor absorption of iron
Check your vitamin d3 levels as well, yeah low ferritins can be a reason
It’s like we have the same symptoms with so many things omg. I have low ferritin too but they said I wasn’t anemic but my storage of iron was super low for last few tests and I eat plenty of iron and also take iron supps all the time. I have shocking gut issues though so I’m assuming it’s my absorption issues making my iron low and also maybe a gut parasite/infections stealing all my iron etc since I have a very low immune system infections are very hard for me to fight off and I never seem to get rid of them completely. I also get cold all the time on and off. It drives me crazy being cold so much. Even if I take my thyroid meds and iron etc I’m still cold a lot. I take loads of things to help it and it does help a bit on and off but I’m sure it’s due to infections making me so cold so that’s prob why I’m getting cold due to my cells getting blocked and not able to take in iron and t3 etc. I could be wrong I am yet to find out these issues as I have crappy doctors l
But lately my dizzy spells have gotten much better due to what I’m taking. I’m forcing myself to exercise too and taking iron with apple cider vinegar and water or like a lemon squeezed in water. The acid and vit c etc helps absorb iron apparently so I think that’s helped I have noticed it’s helped a bit. I think it’s too acidic to drink on it’s own lol but with a bit of water it’s much easier to get down or adding lemon juice to other fruit juice is a great way to get it down too. It’s better for you to have natural vitamin c than the tablet form or maybe have both whilst taking iron to absorb as much iron as you can. I am going to get tested in a week and see if it’s working and hoping my ferritin is higher as it’s been low for a while now and strangely I haven’t been told I have anemia but I hardly get tested as much as I should so maybe I do get anemia at times and that’s why I’m so fatigued and cold etc. I am soooo cold these days I have to take so many things to warm up and even then it doesn’t always work. Omg I’m so fatigued sorry my brain fog is bad I apologise if my messages are a bit scattered.
Hi may I ask, has anyone experienced enlarged nipples after 2 weeks of iron infusion?
my ferittin was at 26.5 I took iron infusion 500 mg ferric carboxy..... Now, in 10 days of infusion, it's 358. It's too high. What should I do?
How are you doing now? Me too, after iron infusion, my ferritin rose sharply to 385. How was your ferritin level now?
I have dysautonomia, mcas, fibromyalgia, Ed’s, endiometriosis, chronic fatigue syndrome and im getting a iron infusion this Thursday so nervous, I’ve heard you can react badly?
Iron, b12 -b6-b9 and D3 are important for Fibromyalgia. Also dietary changes. But there is primary and secondary FM, just and fyi
Did u feel any sleep issues as side effect after infusion ?
I'm getting my first infusion of Feraheme tomorrow at my oncology center (disclaimer: I don't have cancer, but I do have a blood disease in my plasma). It's normal to give benedryl and zofran before any infusion like these. I cared for my dad during chemo twice, and it was the same protocol for his infusions. I'm not sure how the infusion room will be during Covid. I have interstitial lung disease, so sometimes I can't help coughing, but it's super awkward to cough around chemo patients even though I'm not a contagious kind of sick- the other patients don't that. Plus, I am a really difficult stick, and I've already been stuck about 4 times in the past week, so I hope I have a vein left. Thanks for the video, I hope it made you feel better. POTS is no fun!
I have ild (pft diagnosed) I also have low ferritin and have Crohn’s disease I will be getting 300mg venofer next week I’m nervous. Idk what to expect
Thank you so much for this video. I am going on Friday 5-5-23 to have my first iron infusion. My Ferritin level went from an 11 to 5 in one month. I am pretty scared due to the fact that I have many allergies and reactions to medication. My doctor said he wanted to give me 5 bags of iron in one infusion. This is so scary to me. What I read is the more they give the harder it is on your body. I am going to see on Friday if they will do it a little at a time. Maybe over the course of a couple of weeks. I would feel much better about that. They told me to take a benedryl an hour before my infusion. I always carry my epi pen in case I have a reaction to something I ate or medication I took. I have had many surgeries and they don't phase me but this infusion is not setting well with me. I am going to call the infusion center tomorrow and see if I can get some answers to my question. Hugs and blessings
I hope everything went well!! How are you feeling today ? I hope all is well
I'm so glad if I found your Channel! I actually had my ferritin at 13 last September.I've been taking iron supplements religiously since then; however, I just had my ferritin checked and it says 33. So it's still low. And I'm experiencing a lot of hair loss. So this gives me an idea to talk to my doctor about. Thanks for sharing!
I’m glad it was helpful for you and hope you will be able to get your levels up and feel better! ☺️
What about ur hairloss
Hello were you able to raise your ferritin please?
My ferritin is 46 do i need infusion ...or i can mange using tablets some one pls help
With your numbers try supplementing first. Go on Facebook and join "The iron protocol" group to follow the correct guidelines.
I'm getting an infusion soon. I can tell you're short of breath on the video just like me!
I m low feritin level i feel breathlesnes and my heart racing is anyone experience there symptoms??
Hey i also have pots and for the past 8 years low ferritin the tablets werent working and so i got first infusion today
Im kinda shock that i have ferritin 4 and hemoglobin in 10 and i just got iron pills?
1.99 Ferritin and 8.2 HGB here! Getting this done tomorrow for the first time.
All the best!! 🙏🏻
Let us know how it went. I have my 2nd drip tomorrow. Once a week
Hey, can i ask this infusion caused acne to you ? Because supplements have an effect of causing cystic acne to me. I wanna know if it would be the same with the infusion?
I've had ferritin levels between 5 & 6 for the last 7 years and my doctor had the nerve to tell me I only have very minimal low iron.
Wow! I'm sorry to hear that. Eating red meat and beef liver capsules has been whats helped me the most. If I could go back and not have the infusion, I would!
I'm going today to get iron infusion o was skeptical about it but the iron pills arent working
I hope it goes okay for you and that it helps you feel better! ❤️
Hi, I was wondering how your iron Infusion went?? How did you feel after, any side effects? I go for my 1st infusion on Monday
@@amarie_love8923 how was your infusion?
My ferritin has been a 4 or around that for about 7 years or more and I can’t stomach the tablets. My doctors won’t give me infusions because I’m not anaemic 😔
My ferritin has been at a steady 9 for years, no doctor has been concerned, I guess we're not considered anemic at this point even though we still feel lousy
Should I be worried of Iron staining
Mine is at a 3. And has been for a long while except for a short bit where I got it up to almost normal with equate kids chewable vit with iron. I now have issues with mammalian based foods and byproducts bc of tick bite. I got to hematologist tomorrow. Scared bc infusion and all the mammalian based products everywhere.
I’m really sorry to hear that! You may want to look into beef liver supplements (which are very rich in iron), some do much better with it than with artificial iron supplements. Wishing you the best!
THANKS FOR SHARING!!!
❤️❤️
Everything okay now?
What do you think about level 26.5...does it need infusion?and how are you now?. Hope you r really well
That’s low, you could benefit from an iron infusion.
You really only need one if you are under a 10
Mine is a 6, and my doctor only prescribed pills 😔
@@breeannwalker8309 what???...see another doctor..pls... consult some expert
I guess it depends if the iron tablets are working? how your feeling in general. Mine is 12 and i was finding it hard to stomach the tablets so he suggested getting an infusion. im getting mine tomorrow
Have you noticed your POTS getting any better or is it about the same?
I haven’t had any change, but I did have major surgery right after my infusions so that could be impacting it.
Everybody’s crying about their levels being 7,8,10,12, 30s but My feritin is 2.8 🤕 and i have been suffering from insomnia and hair loss and fatigue and so on
My ferritin level is 2... I just found out. Anxiety, depression, you name it I have it.. living a low quality life. I'm getting my first iron infusion on Friday. Go on Facebook and join "the iron protocol" group. Everything you need to know is on there.. the correct guidelines.. Dr's are IGNORANT.
@@Ela-eh3hm ohh. My doc just prescribed iron supplements. Who should get infusions and at what number? My HB is fine, RBCs slightly low and total iron is 30. I’m not anemic so should i be get infusion?
@@anonymus5316 same here for me too, have you had your infusion done?
@@anonymus5316 What are the symptoms you've had ?
Mine is 13 and I have hair loss.
Did you have skin stain on the place you had the iv?
Pretty sure she would have mentioned it if she did. That only happens in about 1 in 100 people that have an iron infusion.
Is your ferritin level specifically related to Eds? I'm on blood Thinners and take iron 325 every other day. My ferritin still went from 35 to 12 in a few months. Have my first iron infusion shortly. Doctor sounded like she wanted to get me in immediately when she learned I just slept for 20 hours straight. I've not done that since I was growing an inch overnight in my teenage years. Lol
I'm not sure how or if its related to EDS! I hope your infusion goes well!
@@HealingWithRachael thanks! Yeah there are not really any studies on it. I look forward to seeing if they help
My ferritin is 5, highest is 7 I believe. I’m very sick, start my infusions next week. Stumbled across this because I am a bit scared of it all.
That was the exact range mine has been! Still on iron supplements. Makes me sick and every 6months in drops back to that and I know as I start getting night sweats and short of breath more than usual (have asthma) and the feeling of tiredness and sleepiness consumes me that’s when I ask my doc hey I think we should check it and I’m always right so far, lowest I’ve been was 5 and this was this or last year where it should be in the ~100 and I know supplements are better than getting iron infusions as it’s from someone else’s blood which carries risks and getting supplements or infusions either way is basically putting a bandaid on it but goodness I’m willing to try infusions and or consult a haematologist. I’m getting tired of it.
@@LittleCutieABDL uwu yeah I totally feel you on that one :/ probably going back in for another round of 5/6 week infusions again.
How are you now? I also did infusion.. But after 1 year it again become low😢😢
My ferritin is 3 right now.🥴 I need an iron infusion real bad.
I have celiac disease and my iron levels have been at 4 since 2018 and only now the doctors have decided to do anything. I’m having an iron infusion on Wednesday and I’m really scared of the side affects because I have a phobia of being sick and throwing up and also swallowing pills
hmm.. mine is at a 4 as well.. but my doc just said to take iron pills.
@@allysoncross1634 take your meds !! I was allergic to the pills they gave me and that’s why I had an infusion, my levels are back at the normal level and it’s been 4 months :)
Kira how did your treatments go? Any side effects during treatment or after? What did you do to prep yourself the day of infusion?
@@fortheloveofmoon treatment was absolutely fine !! It’s just like getting a blood test not painful and the only side effects I had was being very tired and aching but everyone is different!! It’s been about 8months now and I had a blood test a few days ago to check my iron levels again as I’ve been showing signs again of low iron
@@fortheloveofmoon but genuinely it’s nothing to be worried about
My ferritin level is a 12 and I am having severe hair loss 😭 How much did your levels increase after the infusion? Thanks for sharing your story! I’m hoping to start to share mine soon. I also have POTS and a host of other issues.
I’m sorry to hear that! My levels went up a lot after the infusion-to like 200 from 10. I had never been above 20 before that. Good luck with everything!
@@HealingWithRachael how do you feel with 200? Functioning optimally?
@@Ela-eh3hm Hi Bella! Unfortunately, I have a lot of other health issues so I'm not doing well. But I'm still glad that I was able to address my low ferritin levels!
@@HealingWithRachael Hi Rachel, may I ask what other issues you have? I have ferritin levels of 16 (I'm guessing for 4 years since I realized something was preventing me from living an active lifestyle I once had) I am hoping this is the only thing that is wrong with me. People have mentioned POTS which can mimic anemia. I do have heavy periods so....I'm also hoping my anemia is caused by that alone and not any of internal hemmarging.
@@HealingWithRachael I hope & pray you recover soon and be full of vitality.
Take heme iron supplements for management. They made all the difference for me. Women are constantly loosing iron (and men too in case of surgeries fe)
Do we need to take medicine through out our life.
My iron levels 10
Mine has been at 11 ( ferritin) . This is the same for me, it hasn't improved .
Thanks for the video.
Love from both of us.
Currently getting my iron infusion as I'm watching this video. My ferritin is 1.8 and my Hb is 6.
I hope your infusion helps you!!
How did it go? I have similar readings.
I'm getting this 1 week from today for cancer
I find when my iron is low I want to sleep a lot. And I eat steak. Cause I can't do iron pills and they never gotten around to doing my iron infusions. So I do this on my own
Love it! I went carnivore and eat lots of red meat now. I feel great 😃
I cant take those tablets only paracetemol
Wth?? I’ve had severe low iron levels for years..I’m now at 8. My Ferritin has been less than 3 for several years and my hemoglobin is also way low. But…neither my normal dr or my endocrinologist seem to care at all!! Mr reg dr literally chuckles and says “ your red blood cells are virtually nonexistent.) I’ve had daily headaches that turn into migraines 3-4 times a week for almost 20 years, I’m having horrible palpitations( which I’ve repeatedly cried to the dr about), they are keeping me from sleeping, bc they’ve gotten so bad, I’m so dizzy that I’m falling around the house…basically been bed ridden for 3 months bc of it all along w the extreme fatigue, body feels like I’ve been hit by a bus, terrible leg cramps, constipation for years along w stomach pain, and always so fricking cold..all the time!! Now I’m having chest pains and shortness of breath, and my hair loss is unbelievably worst than before. Depression and anxiety have now kicked in so bad that sometimes I just wanna give up..I can NOT live like this anymore. I’ve been going through this since right before my 19th bday and I’m 38 now. Help!! What do I do..anyone know??
Have things got better for you? How are you now?
I really think I need this, since my doctor prescribed me iron tablets which haven't done anything. I am scared if I do. :(
i have the same situation :( hope you get better asap! :)
@@vqxm7 Thank you! It's only just gotten worse tho. (no matter how many blankets I can never get warm)
I will be getting an iron infusion this friday and another next friday. i am very nervous
Good luck!! You got this!
@@HealingWithRachael thank you!!!!
@@momma.jess_ how did you do?
@@Ela-eh3hm i did well! i did have a reaction both times, and they arent sure if it was from the iron or the steroid before the iron, i believe it was the steroid because my body has never handled them well. However it was a fairly mild reaction so i didnt need any medication for it, my face, chest and upper arms turned a bright red/purpleish blue and was extremely hot, that lasted two days each time. and i did have body aches and was very tired the first few days after. but now i am doing better than before iron infusions so they are def worth it!
How much it cost for iron infusion
It depends on if you have insurance/what kind of plan it is.
I think the injector for you can get a coupon from the pharmaceutical company and I don’t know if it’s the cost with insurance or you can get it as low as $50.
I’m getting an infusion on Friday and my co-pay is 200... but she told me if I didn’t have insurance it would’ve been $1000 😳😳😳
I just found out mine is at 8 😔
Initially my ferritin was 23. Two iron infusions later my ferritin is 580
How do you feel with your ferritin that high?
How are doing now? Did the ferritin level went down now?
How are doing now? Have you ferritin went down now?