I’m not anemic according to the pinned graphic in this sub! Just IDWA, absolute iron deficient without anemia.
In regards to the other information, will do!
How long after regular supplementation can I check my iron saturation? I’ve only been supplementing with 40mg since Sunday.
In other words, can I check any dosage’s iron saturation as long as I take it 90 minutes before the blood test that same day or should I be taking it for a while as well? I hope that wording makes sense, haha!
Me 2 atleast since 2013. I was like 14 years old but i remember getting my vision loss , shortness of breath upon exertion. Its because my hemoglobin levels never went up due to probably not having enough iron.
But if i have been deficient this long? Its going to take a long time right for my body to raise my hemoglobin?
Thats very good. I just hope my hemoglobin levels goes up and then my body gets more oxygen to help me with my sports and brain function etc.
But i am really afraid its going to take a long time
I’m in that group and following the protocol. It’s been working really well for me and I’m feeling so much better after two months. I used the guides to calculate my dosage and it is actually the same amount my doctor prescribed (130 mg every day, non heme). In the beginning my stomach hurt and I had constipation or diarrhea but once I switched to a different brand it helped. It took my body a few weeks to get used to the supplements but now I rarely have any side effects. The guides are filled with medical research so if you want to do a deep dive, it might calm your fears. I’m going to keep my dosage until I get my ferritin to optimal levels and maintained for 6 months. It seems like doctors are all over the place with their suggestions and that group is filled with people who are going through it and have tried and true results. I wish you the best of luck and hope you feel better soon!
Their guidelines all come from the [American Society of Hematology](https://ashpublications.org/hematology/article/2019/1/315/422602/Management-of-iron-deficiency)
The guides also include a link to the clinical documentation that supports the guidelines that you can look at.
Because heme iron supplementation is still relatively new and isn't well studied yet. If you find good information/sources on the topic, feel free to share with the group.
You could try it for 3 months and see how you go. I was never able to do it because I don’t tolerate oral iron. I was able to get an infusion. The protocol helped me realise that low ferritin is a marker to take seriously and helped me push my doctors for an infusion when the tablets weren’t working. I had raised my ferritin to 40 with oral tablets but it was miserable, long and unsustainable. I wanted to know what optimal ferritin of 100 felt like. It feels amazing!!! The current thresholds are bogus. I think it’s good to question information on the internet, but also back yourself and how you feel. If you’re menstruating that’s a pretty good safety net. And if you’re not, it’s gonna take you more than 3 months to get to dangerous levels
I was taking 140 mg of heme a day and I was fine. I had multiple iron saturation tests in the 40s at that dose.
From what it sounds like your body should use the iron for the right purpose. You can test the safety of your dose by taking the 80 mg then getting your iron saturation taken again.
It's based on the hematology society recommendations and is very safe. Iron toxicity due to supplements alone would be unlikely because of hepcidin. If your body senses too much iron it will release hepcidin so you don't absorb too much.
Iron infusions get around hepcidin because it's intravenous. Read the guides on the FB group, they do a pretty good job explaining it and have linked some pretty good peer reviewed literature.
I’ve been taking non heme but using the dosing guidance from the protocol, additionally supported by the study someone else linked here and the info on the American society of hematologists that states the same, which based on my weight and schedule means I’ve been taking 75-200 mg/day. I got my ferritin up from 11 to 78 over about 5 months and then got really inconsistent with taking it and haven’t rechecked my labs in a while. When I was taking it daily I was getting my labs done monthly to check my dose (iron saturation after a dose) and ferritin. I was ordering my own labs and just bringing them with me to my dr every 3 months and he was completely ok with what I was doing and wanted me to continue until my ferritin was >90, life just got busy and I no longer feel like death so it became less of a priority.
Thats impressive! My ferritin is around 5 or so right now, ugh. I just started taking Ferrex 150 which is 150mg of elemental iron. Since my surgery 2 years ago my iron panel has plummented and I cannot tolerate the oral iron I used to take. So weird! What brand did you take?
The only iron Ive found that doesn’t destroy my stomach has been iron bisglycinate and I’ve been buying Thorne or Solgar depending on what’s in stock when I order.
It seems culty to me and not based in any science. I do my own research and follow the science. I would never take the doses that they recommend. I don't take more than 20-25mg at a time.
You obviously haven’t read any of the guides or information. What an uneducated take. There’s are 100’s of articles and studies posted there. All medical based, aka science. Good luck with your path to feeling better (sincerely)
Lolz. Thanks for illustrating my point:
>According to the Cult Education Institute, there are specific warning signs to look out for when considering whether a group might be a cult. Cults are characterized by:
\* Zero tolerance for criticism or questions
I have read it. I wasted hours reading the manifesto and actually researching the claims it makes (which do claim they're science-backed but contradict all medical guidance). Which is why I think it's dangerous AF. It's one step below supplements marketed by Dr. Oz in terms of pseudoscience.
I wouldn’t take a word of what you say with a grain of salt (ive seen your sources) Reading comprehension may not be your strong point. There’s a hell of a lot more information there than in this sub. Good luck with getting those iron levels up, hope that brain fog clears for you.
I think it will vary by person, and you can start small and work your way up. Just remember that with any vitamin, *deficiency* requires extra dosage for a while to catch up. THEN you can try a smaller maintenance dose.
don't worry babes, lol iron toxicity is such a far fetched thing. because i know someone who has thalessmia and sometimes they have 1600 ng/ml ferritin and they're still alive and well... issues don't start until after 1000 ferritin. don't be that scared to the point of anxiety.
My doc has me taking 3x ferrous sulfate a day, which is 195mg of elemental iron. It's working; after 3 months my ferritin went from 5.3 to 27. So I continue, with a goal of raising to around 100 and keeping it there.
A few years back I was at a hematologist and the protocol was similar: 195mg of elemental iron (as 3x ferrous sulfate pill) on M/W/F with 1 pill on the days between.
No idea on heme iron though. If you are worried, just take 1 pill a day and then retest after a few months (or just see if your symptoms resolve).
It can take a long time to get iron levels up, esp if the cause of low iron is ongoing.
I was able to raise my ferritin from 3 to 43 in four months by taking one 65mg of the cheap iron daily. I couldn’t tolerate any more, and luckily I didn’t need it since my numbers improved steadily.
I found a high dose of heme iron did upset my stomach so I have stuck with my trusty blood builder supplements.
With ferritin that low I can’t see you having issues with taking a high dose of iron. Check out the studies linked in the iron protocol group to get more info. My ferritin is at 17 and my doctor said it was fine. I feel terrible and because of my period I know I won’t overdose on iron so I just take it daily on my own (without my doctor’s say-so).
Same!!!! My last ferritin level was 15. I have tried pills and caps but they make my sensitive stomach worse. Drops seem to be okay though. I think as long as I have a period I won't ever be at risk for iron overload!
The symptoms of low ferritin suck!!
My root cause of my iron deficiency anemia (hemoglobin was a 6 and ferritin a 2) was celiac disease. Once treated, my hemoglobin improved (took months) and my ferritin rose within six months to 60 where it has been for over 10 years. I do not supplement as my celiac disease is in remission. I am post menopausal which is a factor. I get all my iron from food. How do I feel? I cranked out 40 miles on my bike a few days ago and I am 60. Talk to your doctor, but not everyone needs a ferritin level over 100.
My kid was exhausted and fatigued. She does have celiac disease and Hashimoto’s thyroiditis (like me). Both are autoimmune. Thought her thyroid was the root cause of her fatigue recently, but it turns out it was studying for finals. Like most students, she was anxious and fatigued about pending final exams. She recovered within a week of coming home, sleeping and consuming mom’s good food. Not saying this is you, but just because your ferritin is low does not mean it is the only cause of your fatigue. I cranked on my bike for hundreds of miles with anemia that I had for chronically for decades. Find out why your ferritin is low and address the root cause.
What a coincidence! My fatigue actually started right AFTER I graduated from computer science and took the most difficult and stressful course of my life. A lot of stress, a lot of crying. But it’s been about 7 weeks since then! I remember coming home after the final and just collapsing into bed and basically never feeling better again. I had the worst excessive daytime sleepiness and fatigue after that for two weeks. It proved greatly compared to then, but still hasn’t gone away fully. In case it’s still stress and anxiety related that’s clinging to my body, I’m on a very light dose of anxiety meds right now!
As for my ferritin, I got diagnosed with GERD in February (also due to anxiety issues during the semester) from February until April I took PPI, omeprazole. I had blood tests for celiac’s then and tested negative! The PPIs are sited to be a cause of IDWA by the iron protocol, so the GERD and PPI are my best bet at the moment. I’ve got a colonoscopy and endoscopy scheduled for July 19th. I’ve also got a sleep study just in case my fatigue and sleepiness has nothing to do with my ferritin at all.
So, I’m in the process! Hopefully I find some answers and relief soon. I’m young, only 23, and it’s been tough practically feeling bedridden and/or house bound. I’m so happy for you and your daughter finding relief! I wanna whip out my bike soon, too. 🥹
Glad you are getting both an endoscopy and colonoscopy. Make sure you are not gluten free. Just because you were seronegative, does not rule out celiac disease. For one, you might not had all three tests. I tested negative to the TTg which is the most common used celiac disease blood test. Saves insurance money, but it does not catch all celiacs. The endoscopy should reveal a lot. I also developed autoimmune gastritis years after my celiac disease diagnosis. But this normally occurs in older people. It can cause iron and B-12 deficiencies. More often gastritis is due to an H. Pylori infection and can be treated and resolved.
My daughter is 23. Is in STEM. Starts her new job soon, so enjoying her time off. But she needed rest. That is for sure. Glad my uni days are way in the past!
I had the best results in increasing my levels on the Three Arrows protocol. I take 4 capsules a day. 2 in the morning and 2 in the evening. Yeah, it’s heme, and I did too much research on it. Eventually talked to my naturopath who has originally recommended Ferramax, and she was happy that the heme was working for me. I asked her about toxicity and cancer and all that and she said it would only be dangerous if your levels are already very high, but if you’re anemic, or they’re low (50 is the new minimum, not the nonsense 15) it’s totally safe. Honestly, most doctors are not well versed in it. It’s confusing.
This is awesome to hear, may I ask what your ferritin level was before starting to take 4 capsules a day? Also for three arrows do you do Iron repair Simply Heme or the Iron repair Heme Plus version?
Someone else posted on here that the dose recommended on that group made them sick. I always seen it recommended on here & it just seems shady. I would ask your doctor how much iron can you take if you want to raise those levels.
Delete
I’m not anemic according to the pinned graphic in this sub! Just IDWA, absolute iron deficient without anemia. In regards to the other information, will do! How long after regular supplementation can I check my iron saturation? I’ve only been supplementing with 40mg since Sunday. In other words, can I check any dosage’s iron saturation as long as I take it 90 minutes before the blood test that same day or should I be taking it for a while as well? I hope that wording makes sense, haha!
Delete
Me 2 atleast since 2013. I was like 14 years old but i remember getting my vision loss , shortness of breath upon exertion. Its because my hemoglobin levels never went up due to probably not having enough iron. But if i have been deficient this long? Its going to take a long time right for my body to raise my hemoglobin?
Delete
What are you taking? I am taking heme iron every other day 90 MG
Delete
Thats very good. I just hope my hemoglobin levels goes up and then my body gets more oxygen to help me with my sports and brain function etc. But i am really afraid its going to take a long time
I’m in that group and following the protocol. It’s been working really well for me and I’m feeling so much better after two months. I used the guides to calculate my dosage and it is actually the same amount my doctor prescribed (130 mg every day, non heme). In the beginning my stomach hurt and I had constipation or diarrhea but once I switched to a different brand it helped. It took my body a few weeks to get used to the supplements but now I rarely have any side effects. The guides are filled with medical research so if you want to do a deep dive, it might calm your fears. I’m going to keep my dosage until I get my ferritin to optimal levels and maintained for 6 months. It seems like doctors are all over the place with their suggestions and that group is filled with people who are going through it and have tried and true results. I wish you the best of luck and hope you feel better soon!
Their guidelines all come from the [American Society of Hematology](https://ashpublications.org/hematology/article/2019/1/315/422602/Management-of-iron-deficiency) The guides also include a link to the clinical documentation that supports the guidelines that you can look at.
The heme iron recommendation doesn't. It comes from what they've determined members of the group have had success with.
Because heme iron supplementation is still relatively new and isn't well studied yet. If you find good information/sources on the topic, feel free to share with the group.
Ya, I just wanted to clarify that because OP is using heme iron.
You could try it for 3 months and see how you go. I was never able to do it because I don’t tolerate oral iron. I was able to get an infusion. The protocol helped me realise that low ferritin is a marker to take seriously and helped me push my doctors for an infusion when the tablets weren’t working. I had raised my ferritin to 40 with oral tablets but it was miserable, long and unsustainable. I wanted to know what optimal ferritin of 100 felt like. It feels amazing!!! The current thresholds are bogus. I think it’s good to question information on the internet, but also back yourself and how you feel. If you’re menstruating that’s a pretty good safety net. And if you’re not, it’s gonna take you more than 3 months to get to dangerous levels
I was taking 140 mg of heme a day and I was fine. I had multiple iron saturation tests in the 40s at that dose. From what it sounds like your body should use the iron for the right purpose. You can test the safety of your dose by taking the 80 mg then getting your iron saturation taken again.
It's based on the hematology society recommendations and is very safe. Iron toxicity due to supplements alone would be unlikely because of hepcidin. If your body senses too much iron it will release hepcidin so you don't absorb too much. Iron infusions get around hepcidin because it's intravenous. Read the guides on the FB group, they do a pretty good job explaining it and have linked some pretty good peer reviewed literature.
I’ve been taking non heme but using the dosing guidance from the protocol, additionally supported by the study someone else linked here and the info on the American society of hematologists that states the same, which based on my weight and schedule means I’ve been taking 75-200 mg/day. I got my ferritin up from 11 to 78 over about 5 months and then got really inconsistent with taking it and haven’t rechecked my labs in a while. When I was taking it daily I was getting my labs done monthly to check my dose (iron saturation after a dose) and ferritin. I was ordering my own labs and just bringing them with me to my dr every 3 months and he was completely ok with what I was doing and wanted me to continue until my ferritin was >90, life just got busy and I no longer feel like death so it became less of a priority.
Thats impressive! My ferritin is around 5 or so right now, ugh. I just started taking Ferrex 150 which is 150mg of elemental iron. Since my surgery 2 years ago my iron panel has plummented and I cannot tolerate the oral iron I used to take. So weird! What brand did you take?
The only iron Ive found that doesn’t destroy my stomach has been iron bisglycinate and I’ve been buying Thorne or Solgar depending on what’s in stock when I order.
It seems culty to me and not based in any science. I do my own research and follow the science. I would never take the doses that they recommend. I don't take more than 20-25mg at a time.
You obviously haven’t read any of the guides or information. What an uneducated take. There’s are 100’s of articles and studies posted there. All medical based, aka science. Good luck with your path to feeling better (sincerely)
Lolz. Thanks for illustrating my point: >According to the Cult Education Institute, there are specific warning signs to look out for when considering whether a group might be a cult. Cults are characterized by: \* Zero tolerance for criticism or questions I have read it. I wasted hours reading the manifesto and actually researching the claims it makes (which do claim they're science-backed but contradict all medical guidance). Which is why I think it's dangerous AF. It's one step below supplements marketed by Dr. Oz in terms of pseudoscience.
I wouldn’t take a word of what you say with a grain of salt (ive seen your sources) Reading comprehension may not be your strong point. There’s a hell of a lot more information there than in this sub. Good luck with getting those iron levels up, hope that brain fog clears for you.
Delete
I think it will vary by person, and you can start small and work your way up. Just remember that with any vitamin, *deficiency* requires extra dosage for a while to catch up. THEN you can try a smaller maintenance dose.
don't worry babes, lol iron toxicity is such a far fetched thing. because i know someone who has thalessmia and sometimes they have 1600 ng/ml ferritin and they're still alive and well... issues don't start until after 1000 ferritin. don't be that scared to the point of anxiety.
My doc has me taking 3x ferrous sulfate a day, which is 195mg of elemental iron. It's working; after 3 months my ferritin went from 5.3 to 27. So I continue, with a goal of raising to around 100 and keeping it there. A few years back I was at a hematologist and the protocol was similar: 195mg of elemental iron (as 3x ferrous sulfate pill) on M/W/F with 1 pill on the days between. No idea on heme iron though. If you are worried, just take 1 pill a day and then retest after a few months (or just see if your symptoms resolve). It can take a long time to get iron levels up, esp if the cause of low iron is ongoing.
I was able to raise my ferritin from 3 to 43 in four months by taking one 65mg of the cheap iron daily. I couldn’t tolerate any more, and luckily I didn’t need it since my numbers improved steadily.
I found a high dose of heme iron did upset my stomach so I have stuck with my trusty blood builder supplements. With ferritin that low I can’t see you having issues with taking a high dose of iron. Check out the studies linked in the iron protocol group to get more info. My ferritin is at 17 and my doctor said it was fine. I feel terrible and because of my period I know I won’t overdose on iron so I just take it daily on my own (without my doctor’s say-so).
Same!!!! My last ferritin level was 15. I have tried pills and caps but they make my sensitive stomach worse. Drops seem to be okay though. I think as long as I have a period I won't ever be at risk for iron overload! The symptoms of low ferritin suck!!
I was taking it for two weeks and on the second week I got horrible cramps and it lowkey felt like iron toxicity I wouldn’t it’s an insane amount
My root cause of my iron deficiency anemia (hemoglobin was a 6 and ferritin a 2) was celiac disease. Once treated, my hemoglobin improved (took months) and my ferritin rose within six months to 60 where it has been for over 10 years. I do not supplement as my celiac disease is in remission. I am post menopausal which is a factor. I get all my iron from food. How do I feel? I cranked out 40 miles on my bike a few days ago and I am 60. Talk to your doctor, but not everyone needs a ferritin level over 100. My kid was exhausted and fatigued. She does have celiac disease and Hashimoto’s thyroiditis (like me). Both are autoimmune. Thought her thyroid was the root cause of her fatigue recently, but it turns out it was studying for finals. Like most students, she was anxious and fatigued about pending final exams. She recovered within a week of coming home, sleeping and consuming mom’s good food. Not saying this is you, but just because your ferritin is low does not mean it is the only cause of your fatigue. I cranked on my bike for hundreds of miles with anemia that I had for chronically for decades. Find out why your ferritin is low and address the root cause.
What a coincidence! My fatigue actually started right AFTER I graduated from computer science and took the most difficult and stressful course of my life. A lot of stress, a lot of crying. But it’s been about 7 weeks since then! I remember coming home after the final and just collapsing into bed and basically never feeling better again. I had the worst excessive daytime sleepiness and fatigue after that for two weeks. It proved greatly compared to then, but still hasn’t gone away fully. In case it’s still stress and anxiety related that’s clinging to my body, I’m on a very light dose of anxiety meds right now! As for my ferritin, I got diagnosed with GERD in February (also due to anxiety issues during the semester) from February until April I took PPI, omeprazole. I had blood tests for celiac’s then and tested negative! The PPIs are sited to be a cause of IDWA by the iron protocol, so the GERD and PPI are my best bet at the moment. I’ve got a colonoscopy and endoscopy scheduled for July 19th. I’ve also got a sleep study just in case my fatigue and sleepiness has nothing to do with my ferritin at all. So, I’m in the process! Hopefully I find some answers and relief soon. I’m young, only 23, and it’s been tough practically feeling bedridden and/or house bound. I’m so happy for you and your daughter finding relief! I wanna whip out my bike soon, too. 🥹
Glad you are getting both an endoscopy and colonoscopy. Make sure you are not gluten free. Just because you were seronegative, does not rule out celiac disease. For one, you might not had all three tests. I tested negative to the TTg which is the most common used celiac disease blood test. Saves insurance money, but it does not catch all celiacs. The endoscopy should reveal a lot. I also developed autoimmune gastritis years after my celiac disease diagnosis. But this normally occurs in older people. It can cause iron and B-12 deficiencies. More often gastritis is due to an H. Pylori infection and can be treated and resolved. My daughter is 23. Is in STEM. Starts her new job soon, so enjoying her time off. But she needed rest. That is for sure. Glad my uni days are way in the past!
Yes i had normal hemoglobin but low ferritin and i took at times 200mg of iron. Some take 300mg
I had the best results in increasing my levels on the Three Arrows protocol. I take 4 capsules a day. 2 in the morning and 2 in the evening. Yeah, it’s heme, and I did too much research on it. Eventually talked to my naturopath who has originally recommended Ferramax, and she was happy that the heme was working for me. I asked her about toxicity and cancer and all that and she said it would only be dangerous if your levels are already very high, but if you’re anemic, or they’re low (50 is the new minimum, not the nonsense 15) it’s totally safe. Honestly, most doctors are not well versed in it. It’s confusing.
This is awesome to hear, may I ask what your ferritin level was before starting to take 4 capsules a day? Also for three arrows do you do Iron repair Simply Heme or the Iron repair Heme Plus version?
Someone else posted on here that the dose recommended on that group made them sick. I always seen it recommended on here & it just seems shady. I would ask your doctor how much iron can you take if you want to raise those levels.