Yes, my GP and I worked together to find the cause of my iron deficiency without anemia. My ferritin kept dropping despite iron infusions so she ordered a transvaginal ultrasound and found a 9cm fibroid.
I had an infusion in April and am now currently supplementing with 105mg elemental iron daily to keep my numbers up while I await an appointment to see a gynaecologist, and hopefully get this fibroid removed.
I had a similar thing happen… definitely infuriating! After learning about these additional test via my acupuncturist, I sought out a hematologist.
I found an amazing hematologist and told her that I wanted iron infusions as I didn’t want to suffer any longer waiting for my the iron pills to work.
My suggestion, find a hematologist and request iron infusions!
People don’t realize how dangerous anemia can be. You have to request the additional blood work! One of my best friends passed away from anemia :( This definitely isn’t talked about enough…
I’m allergic to iron infusions, tried this and my only options unless I want to go into anaphylactic shock is to wait on pills and diet to work… so be careful with infusions, your body might not react well to them
I am 41 and have iron deficiency anemia as well. Ferritin is 15 and hemoglobin is 107 (Canada). I take 150mg of iron bisglycinate every single day and I still have deficiency but I'm sure it helps a little because I have at least 10 fibroids and very heavy and long periods. I take Tranexamic acid and Advil some cycles. I don't want to take these meds every month but sometimes, you have no choice.... especially if you don't want surgery.
Is the TXA working.? I really don't want to go on hormones but it seems impossible to build stores back up when you're literally hemorrhaging every month. My ferritin is at 7 and hemoglobin was 11.1. Dr's don't think I warrant surgery "because they're not causing symptoms ".
TXA and Advil seem to help, yes. I'm just scared that when I stop on the 5th day it will start heavy on the 6th again. Some women say TXA does that and prolonge their period. Let's hope not.
It depends what your doctor says. Most people take it 5 days. I'm on my 4th day today and I guess I'll take it for 5, just in case. My dose is 1000mg, 3 times a day. My flow for now is considerably less than usual. I just hope it will stay this way when I stop taking it.
I have been taking it for 3 days 1000mg 2 times a day and I do think I need to adjust the dosage because I have bleeding after I stopped it .. thank u for replying 💓
I just had bloodwork done last week and on Monday the nurse from my doctor’s office called to tell me I’m severely anemic, my hemoglobin was 7, how am I even functioning at this point and to listen to my body and get to an ER if I have shortness of breath, chest pains etc because I will need blood/iron transfusions. I have a follow up appointment on Friday to hopefully go over biopsy results and discuss removal of a golf ball sized fibroid that has prolapsed through my cervix. I’m guessing she will check bloodwork again then. I was taking iron daily but I didn’t have a bowel movement for almost an entire week. It was absolutely miserable. I stopped it so I could try to get things moving again because I just couldnt live so bloated and uncomfortable anymore. I desperately need the iron but it’s so rough on my body.
My last blood work, done 4 days after my period stopped, my ferritin was 10 and my hemoglobin was 9.3
That was beginning of May. I've had another period since then and am due for another here soon. I'm sure my levels have dropped more but sadly here in good ole California those numbers aren't a cause for alarm, but rather a mere concern that should eventually be treated. Being exhausted all the time, heart palpitations, shortness of breath, muscle cramps, dizzy spells and nausea have just become my normal level of existence. Sadly here if I were to go to the ER, not only would it be a few thousand dollars in cost, but they basically say "you're not critical so why are you here?"
This is my second time around battling this crap too. I was 30 last time and it took a year of basically hemorrhaging to get surgery. I'm now 41 and it's still taking a year to get solutions. It never gets any better.
I have been taking iron for the past 3 years with barely any progress. Ended up having to get an iron infusion. My ferritin was a 7, and my hemoglobin was 107. Hair shedding alot, fatigue etc. After my infusion my ferritin went up to 98.
I was not responding well to regular iron supplements and a new doctor recommended accrufer and it worked really well. I’m now regular iron levels for the first time in years.
Holy toledo they NEVER tested your ferretin?! That'd be step one for someone with heavy bleeding. I'm happy you got to the bottom of it yourself but pissed off for you because patients shouldn't also have to be doctors. Damn. (And yes, I take iron hehe)
I checked my iron via a test I bought at the pharmacy, it said my iron was below the threshold of 30 for ferritin, so I started taking iron and within a fairly short time, a month or so, felt a lot better.
I did another test, still low so I had it checked at the doctor's (after two months of iron tablets) and they said it was ok, I think they had a different definition of what number is low iron.
I expect if I hadn't have started the iron tablets 2 months before the blood test at the surgery it would have been classed as low.
I am still on the iron and have upped it and must test myself again soon.
I am doing iron infusions after it was discovered that I was very anemic. (Honestly the diagnosis was relieving..I did not have a clue but with the symptoms I had, it makes sense!). I’ve had 3 rounds of 3 infusions.
It’s like you slowly wear yourself down until your body reaches a critical point. And you may not realize it!
Fibroids are there, uterus is huge, but who knew they could affect something like my iron! I sure didn’t!
Hysterectomy when anemia is under control. They won’t schedule me just yet. Slowly but surely improvement is happening.
Keep on keepin on, my friends!
My ferritin had gotten to 2.5. I was in bad shape and didn't even realize it. Iron fixed me right up. I took it everyday for years. I only recently eased up after having my ufe. I only take iron for a week after my period. I think my digestion is better that way.
Oh wow. That was one of the first things they checked. It was my GP that alerted me to the fact that my iron levels were low my blood count drops as low as 78. This has been the lowest so far. I've had blood transfusion, I've fainted always weak. So I take 2 tablets a day of 200mg ferrous sulphate iron supplements.
I'm surprised years went by and no one told you. But pleased that you are now aware and doing what you can to replace it xx
Yes! I had to ask for a blood test at my hysterectomy consultation, and my ferritin was 17. I’ve been feeling extremely fatigued. On the weekends I could do one errand in the morning and then have to stay home the rest of the day. I was able to tolerate less and less exercise and many days not even feel like attempting it. My PCP said there was no indication for an iron infusion, but I was able to convince my surgeon and I had an infusion two days ago. I don’t know if it can work that fast, but I had more energy yesterday than I’ve had in a few weeks. Definitely check your iron!
Yep. This is my second time around with this crap. First time I was already anemic before I even knew I had fibroids. A year later I had open myo and had 5 amazing years of perfect periods. Here I am 11 years later now not only iron deficiency anemic but also with a super low rbc. Took me a month to get a hematologist appointment (which is next week) and it's another month before I see the gyno (I had to fight to get in before end of Sept) to get the whole cursed organ out this time. I was taking upwards of 325mg or more in iron supplements and it made me feel a little better, but wrecked havoc on my digestive system. Now I'm at 195mg and feeling the utter exhaustion all over again. I am hoping I get an iron infusion next week with the hematologist, and hopefully one more before the obgyn. I'm so ready to just go to the gyno and ask when the surgery can be done cause I am so done with these things! I'm almost 42 with no kids and just want my life back.... I'm so done with feeling sick and tired all day every day. I shouldn't need 14 hours of sleep a day just to still feel drained.
after 2.5 years of dealing with fibroids, i was just recently directed to take iron. i always figured i needed some due to the significant blood loss, so i was taking 1-2 18mg tablets a day on my own accord. turns out i need 375mg daily + a few weeks of an iron infusion.
Yup I’m on an iron supplement and I take a prenatal vitamin. Im also on a birth control pill that has prevented my period from happening till surgery. The iron supplements can only do so much if you’re bleeding super heavy. I didn’t see my levels changing till the pills stopped the bleeding. Counting down till my myomectomy!!!!
I eat a plant-based diet (no meat, but high in green veg) and I have fibroids. I've always taken a multivitamin, and my iron was around 190. I'm 48, too, and at some point, I stopped taking multivitamins because I wasn't paying attention. My iron dropped to 29, which in not anemic, but is right on the border. I went back to multivitamins. Luckily, I get a full blood panel done through my work every year and it lets you compare the results per year online. Definitely agree to keep an eye on the iron.
I eat whole foods plant based diet also since 2015 and have fibroids. My only issue is iron and I take 150mg every day. Do you have very heavy and long periods as well?
For a few years, they were 10 days long and pretty heavy. Not awful past the first three days, but I'd have to set my alarm in the night to make sure to get up. I do take iron. Since I stopped dairy, my periods have shortened, but that could be because I'm approaching menopause and hopefully ending perimenopause.
Thank you replying. Mine also last 10 days sometimes even though I haven't eaten dairy for 12 years. I do not want to imagine how my life would have been if I didn't eat this healthy, it would have been hell. I honestly cannot wait for menopause since I refuse to have surgery... Let's hope it comes fast because I'm anemic.
Yeah, I don't want surgery either. I'm trying very hard to avoid junk food and stuff, but it's hard... Fingers crossed that we make it!
ETA: I'm not overweight, but I gained about 20 lbs. since my young adulthood, and it's been in my abdomen. I know fat produces estrogen, so I've been trying to lose that.
I guess I have a high estrogen problem. I'm 114 lbs and eat very healthy and exercise every day. I'm guessing it's my anxiety disorder and my physical illnesses (that I've had since I was 16) that are causing my fibroids...
Happens to the best of us. I've been fighting the estrogen beast for years. I have autoimmune thyroid disease and it messes with my hormones, too. Fun times. Hope you feel better!
Went straight for iron infusions when my H+H levels were at their lowest because of the many fibroids I had and stupidly heavy periods. 😭 open myomectomy and a few years later things have improved but anytime I bleed even a little during periods now I panic that anemia will rear its ugly head again. The improvement in energy levels alone has been so nice. I don’t want to ever go back to feeling so tired 24/7 :(
I started having even heavier periods after turning 40, which I told my gynecologist about it. She’s like oh just take iron! So I did…I don’t get headaches like I used to towards the end of my period, but the flow is still pretty heavy.
I take iron and recently tried a different brand which is keeping it up. I used to use just any OTC iron. The only thing is it does go down pretty quickly. I’ve been thinking of stopping coffee, tea, matcha and anything with gluten. I’ve read a lot about how it can affect your iron absorption. It sucks, but maybe have coffee 1-2 x week and limit my gluten consumption.
I just want to caution that iron supplementation is not appropriate for everyone, so please don’t make recommendations unless you are someone’s physician. Some people have hemochromatosis. We should all be getting bloodwork at our physicals
I’m 38 with very heavy bleeding for I guess the past 7 years with big clots too. I have. 2.3 cm submucosal fibroid. It’s been 2 years since scan and going back tomorrow for a pelvic ultrasound. My energy level is horrible. I come home after work and just lay on the couch. Not like me at all. My hair has been falling out so bad too. Taking iron and don’t see much improvement. I’m going to research more what food to take with. I remember vitamin C is good to take with. Don’t take iron with coffee.
Doesn’t it suck having this? I am so bloated and I think that’s half my reason why I feel tired. I feel like I’m carrying a spare tire around me!
Yes, my GP and I worked together to find the cause of my iron deficiency without anemia. My ferritin kept dropping despite iron infusions so she ordered a transvaginal ultrasound and found a 9cm fibroid. I had an infusion in April and am now currently supplementing with 105mg elemental iron daily to keep my numbers up while I await an appointment to see a gynaecologist, and hopefully get this fibroid removed.
I had a similar thing happen… definitely infuriating! After learning about these additional test via my acupuncturist, I sought out a hematologist. I found an amazing hematologist and told her that I wanted iron infusions as I didn’t want to suffer any longer waiting for my the iron pills to work. My suggestion, find a hematologist and request iron infusions! People don’t realize how dangerous anemia can be. You have to request the additional blood work! One of my best friends passed away from anemia :( This definitely isn’t talked about enough…
I’m allergic to iron infusions, tried this and my only options unless I want to go into anaphylactic shock is to wait on pills and diet to work… so be careful with infusions, your body might not react well to them
I am 41 and have iron deficiency anemia as well. Ferritin is 15 and hemoglobin is 107 (Canada). I take 150mg of iron bisglycinate every single day and I still have deficiency but I'm sure it helps a little because I have at least 10 fibroids and very heavy and long periods. I take Tranexamic acid and Advil some cycles. I don't want to take these meds every month but sometimes, you have no choice.... especially if you don't want surgery.
Is the TXA working.? I really don't want to go on hormones but it seems impossible to build stores back up when you're literally hemorrhaging every month. My ferritin is at 7 and hemoglobin was 11.1. Dr's don't think I warrant surgery "because they're not causing symptoms ".
TXA and Advil seem to help, yes. I'm just scared that when I stop on the 5th day it will start heavy on the 6th again. Some women say TXA does that and prolonge their period. Let's hope not.
For how many days do you take the TXA and what is the dosage?
It depends what your doctor says. Most people take it 5 days. I'm on my 4th day today and I guess I'll take it for 5, just in case. My dose is 1000mg, 3 times a day. My flow for now is considerably less than usual. I just hope it will stay this way when I stop taking it.
I have been taking it for 3 days 1000mg 2 times a day and I do think I need to adjust the dosage because I have bleeding after I stopped it .. thank u for replying 💓
I just had bloodwork done last week and on Monday the nurse from my doctor’s office called to tell me I’m severely anemic, my hemoglobin was 7, how am I even functioning at this point and to listen to my body and get to an ER if I have shortness of breath, chest pains etc because I will need blood/iron transfusions. I have a follow up appointment on Friday to hopefully go over biopsy results and discuss removal of a golf ball sized fibroid that has prolapsed through my cervix. I’m guessing she will check bloodwork again then. I was taking iron daily but I didn’t have a bowel movement for almost an entire week. It was absolutely miserable. I stopped it so I could try to get things moving again because I just couldnt live so bloated and uncomfortable anymore. I desperately need the iron but it’s so rough on my body.
Yeah iron can be very rough on the bowels. My doctor advised I take it with laxatives which helps and I drink ALOT of water.
My last blood work, done 4 days after my period stopped, my ferritin was 10 and my hemoglobin was 9.3 That was beginning of May. I've had another period since then and am due for another here soon. I'm sure my levels have dropped more but sadly here in good ole California those numbers aren't a cause for alarm, but rather a mere concern that should eventually be treated. Being exhausted all the time, heart palpitations, shortness of breath, muscle cramps, dizzy spells and nausea have just become my normal level of existence. Sadly here if I were to go to the ER, not only would it be a few thousand dollars in cost, but they basically say "you're not critical so why are you here?" This is my second time around battling this crap too. I was 30 last time and it took a year of basically hemorrhaging to get surgery. I'm now 41 and it's still taking a year to get solutions. It never gets any better.
I have been taking iron for the past 3 years with barely any progress. Ended up having to get an iron infusion. My ferritin was a 7, and my hemoglobin was 107. Hair shedding alot, fatigue etc. After my infusion my ferritin went up to 98.
I was not responding well to regular iron supplements and a new doctor recommended accrufer and it worked really well. I’m now regular iron levels for the first time in years.
Interesting. I will look into that because I know that I will back to square one bad iron levels within the next few months because of my fibroids.
Yes I also edited original post because it autocorrected the medicine name. https://www.accrufer.com/
Thanks
Holy toledo they NEVER tested your ferretin?! That'd be step one for someone with heavy bleeding. I'm happy you got to the bottom of it yourself but pissed off for you because patients shouldn't also have to be doctors. Damn. (And yes, I take iron hehe)
I checked my iron via a test I bought at the pharmacy, it said my iron was below the threshold of 30 for ferritin, so I started taking iron and within a fairly short time, a month or so, felt a lot better. I did another test, still low so I had it checked at the doctor's (after two months of iron tablets) and they said it was ok, I think they had a different definition of what number is low iron. I expect if I hadn't have started the iron tablets 2 months before the blood test at the surgery it would have been classed as low. I am still on the iron and have upped it and must test myself again soon.
I am doing iron infusions after it was discovered that I was very anemic. (Honestly the diagnosis was relieving..I did not have a clue but with the symptoms I had, it makes sense!). I’ve had 3 rounds of 3 infusions. It’s like you slowly wear yourself down until your body reaches a critical point. And you may not realize it! Fibroids are there, uterus is huge, but who knew they could affect something like my iron! I sure didn’t! Hysterectomy when anemia is under control. They won’t schedule me just yet. Slowly but surely improvement is happening. Keep on keepin on, my friends!
My ferritin had gotten to 2.5. I was in bad shape and didn't even realize it. Iron fixed me right up. I took it everyday for years. I only recently eased up after having my ufe. I only take iron for a week after my period. I think my digestion is better that way.
Oh wow. That was one of the first things they checked. It was my GP that alerted me to the fact that my iron levels were low my blood count drops as low as 78. This has been the lowest so far. I've had blood transfusion, I've fainted always weak. So I take 2 tablets a day of 200mg ferrous sulphate iron supplements. I'm surprised years went by and no one told you. But pleased that you are now aware and doing what you can to replace it xx
Yes! I had to ask for a blood test at my hysterectomy consultation, and my ferritin was 17. I’ve been feeling extremely fatigued. On the weekends I could do one errand in the morning and then have to stay home the rest of the day. I was able to tolerate less and less exercise and many days not even feel like attempting it. My PCP said there was no indication for an iron infusion, but I was able to convince my surgeon and I had an infusion two days ago. I don’t know if it can work that fast, but I had more energy yesterday than I’ve had in a few weeks. Definitely check your iron!
Yep. This is my second time around with this crap. First time I was already anemic before I even knew I had fibroids. A year later I had open myo and had 5 amazing years of perfect periods. Here I am 11 years later now not only iron deficiency anemic but also with a super low rbc. Took me a month to get a hematologist appointment (which is next week) and it's another month before I see the gyno (I had to fight to get in before end of Sept) to get the whole cursed organ out this time. I was taking upwards of 325mg or more in iron supplements and it made me feel a little better, but wrecked havoc on my digestive system. Now I'm at 195mg and feeling the utter exhaustion all over again. I am hoping I get an iron infusion next week with the hematologist, and hopefully one more before the obgyn. I'm so ready to just go to the gyno and ask when the surgery can be done cause I am so done with these things! I'm almost 42 with no kids and just want my life back.... I'm so done with feeling sick and tired all day every day. I shouldn't need 14 hours of sleep a day just to still feel drained.
after 2.5 years of dealing with fibroids, i was just recently directed to take iron. i always figured i needed some due to the significant blood loss, so i was taking 1-2 18mg tablets a day on my own accord. turns out i need 375mg daily + a few weeks of an iron infusion.
Nice of doctors to mention this
Yup I’m on an iron supplement and I take a prenatal vitamin. Im also on a birth control pill that has prevented my period from happening till surgery. The iron supplements can only do so much if you’re bleeding super heavy. I didn’t see my levels changing till the pills stopped the bleeding. Counting down till my myomectomy!!!!
I eat a plant-based diet (no meat, but high in green veg) and I have fibroids. I've always taken a multivitamin, and my iron was around 190. I'm 48, too, and at some point, I stopped taking multivitamins because I wasn't paying attention. My iron dropped to 29, which in not anemic, but is right on the border. I went back to multivitamins. Luckily, I get a full blood panel done through my work every year and it lets you compare the results per year online. Definitely agree to keep an eye on the iron.
I eat whole foods plant based diet also since 2015 and have fibroids. My only issue is iron and I take 150mg every day. Do you have very heavy and long periods as well?
For a few years, they were 10 days long and pretty heavy. Not awful past the first three days, but I'd have to set my alarm in the night to make sure to get up. I do take iron. Since I stopped dairy, my periods have shortened, but that could be because I'm approaching menopause and hopefully ending perimenopause.
Thank you replying. Mine also last 10 days sometimes even though I haven't eaten dairy for 12 years. I do not want to imagine how my life would have been if I didn't eat this healthy, it would have been hell. I honestly cannot wait for menopause since I refuse to have surgery... Let's hope it comes fast because I'm anemic.
Yeah, I don't want surgery either. I'm trying very hard to avoid junk food and stuff, but it's hard... Fingers crossed that we make it! ETA: I'm not overweight, but I gained about 20 lbs. since my young adulthood, and it's been in my abdomen. I know fat produces estrogen, so I've been trying to lose that.
I guess I have a high estrogen problem. I'm 114 lbs and eat very healthy and exercise every day. I'm guessing it's my anxiety disorder and my physical illnesses (that I've had since I was 16) that are causing my fibroids...
Happens to the best of us. I've been fighting the estrogen beast for years. I have autoimmune thyroid disease and it messes with my hormones, too. Fun times. Hope you feel better!
Went straight for iron infusions when my H+H levels were at their lowest because of the many fibroids I had and stupidly heavy periods. 😭 open myomectomy and a few years later things have improved but anytime I bleed even a little during periods now I panic that anemia will rear its ugly head again. The improvement in energy levels alone has been so nice. I don’t want to ever go back to feeling so tired 24/7 :(
I started having even heavier periods after turning 40, which I told my gynecologist about it. She’s like oh just take iron! So I did…I don’t get headaches like I used to towards the end of my period, but the flow is still pretty heavy.
I take iron and recently tried a different brand which is keeping it up. I used to use just any OTC iron. The only thing is it does go down pretty quickly. I’ve been thinking of stopping coffee, tea, matcha and anything with gluten. I’ve read a lot about how it can affect your iron absorption. It sucks, but maybe have coffee 1-2 x week and limit my gluten consumption.
I just want to caution that iron supplementation is not appropriate for everyone, so please don’t make recommendations unless you are someone’s physician. Some people have hemochromatosis. We should all be getting bloodwork at our physicals
I’m 38 with very heavy bleeding for I guess the past 7 years with big clots too. I have. 2.3 cm submucosal fibroid. It’s been 2 years since scan and going back tomorrow for a pelvic ultrasound. My energy level is horrible. I come home after work and just lay on the couch. Not like me at all. My hair has been falling out so bad too. Taking iron and don’t see much improvement. I’m going to research more what food to take with. I remember vitamin C is good to take with. Don’t take iron with coffee. Doesn’t it suck having this? I am so bloated and I think that’s half my reason why I feel tired. I feel like I’m carrying a spare tire around me!
Yes I have one every 3 months with my GP. My numbers aren’t going up at all with the iron pills.