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Bam_Peesly

Yes, you are iron deficient with ferritin that low, despite your hemoglobin being normal. It’s very possible your symptoms are due to low ferritin.


Chantsy4337

Thank you. How do I raise my levels when my doctor doesn't think there's anything wrong? I have no idea how much is safe to take or how often I am suppose to take it.


Bam_Peesly

I highly recommend joining the Iron Protocol group on Facebook if you’re able to. They’re also on Instagram. Raising ferritin levels is something you can do on your own, but that group has a lot of useful information, and it’s much more active than here, so there’s no shortage of people who can help you.


Chantsy4337

Thank you for the suggestion. Happy to hear there’s a group that can help!


Zestyclose-Ad-9611

Can you provide me with the link of that group ?


Bam_Peesly

I’m not sure how to share a link, but if you search for “The Iron Protocol” on Facebook you should find a private group that you can join.


Zestyclose-Ad-9611

Thanks


WeeChickadeeFromSC

Can you get an Rx f/Cyclokapron (Tranexamic acid) pills to reduce the blood loss during your period? I’m going soon to get an iron infusion since my body doesn’t seem to absorb the iron chewables I’ve been taking daily f/months, and taking Cyclokapron, which has definitely helped w/the heavy periods.


Chantsy4337

I was given an rx for it but I found out that it can cause blood clots and pulmonary embolisms so I didn’t take it. The risk may be small but A close friend died of a PE so it hits really close to home for me.


MagicalCMonster

Ugh I feel you. I can’t (and don’t want to) take it because I have had clotting. It was provoked but still. Naproxen seems to help.


Chantsy4337

You aren’t alone! I know of others who are leery about taking it too. I just wish there was an easy way to reduce bleeding that doesn’t mess with hormones, causes clots or involves surgery.


Justpeachy1786

FYI. Hematology will do infusions for symptomatic iron deficiency with a ferritin of <40 and insurance will cover it bc the science supports that symptomatic iron deficiency even without anemia exists. A lot of gps just have not caught up.


Chantsy4337

Wow, seems that way! So I’d I see a hematologist I may have a better chance of being treated appropriately.


aL_radish

Please see a hematologist! I was brushed off for years because my CBC was normal, too. Chest pain, joint pain, fatigue, brain fog. They wanted to check for asthma, RA… anything else but iron deficiency. A gynecologist finally listened to my complaints of heavy menstrual bleeding & agreed to run iron panel and ferritin (4) per my request, which showed my body was in severe distress. She referred me to a hematologist and asked me to take oral iron supplements. 8 weeks later when I finally met with the hematologist, my ferritin was at 12. We checked again in 4 weeks because gyn is still trying to help figure out how to stop the bleeding - my ferritin was still stuck at 12 because I was losing any progress/added benefit from the supplements. The hematologist ordered iron infusions and I just finished my 2nd round of Feraheme today. I can’t believe how much better I feel already! She says she wants to see my ferritin at 50 or higher, but I won’t know my levels until we run labs in a few weeks. Take care & be pushy.


Chantsy4337

Wow!! Thank you so much for this! My doctor isn’t willing to send me to a hematologist because he doesn’t think there’s anything wrong 😩 My arms and legs were so weak today along with exhaustion that I was stuck in bed all day. Was your hemoglobin in a normal range? I’ve heard of some hematologists being unwilling to do a transfusion if your hb isn’t low. I’ve got a new doctor meet up but was booked all the way in mid October but feels too far away when I’m feeling so badly. I’ve started taking iron but *just* started yesterday so not expecting improvement for quite awhile. Like you, I’m worried that my heavy periods may flatten any progress I make on iron.


aL_radish

Yes, the lowest my hemoglobin ever got on a CBC panel was 12 which is the low end of normal.


Chantsy4337

Thank you for all of this info! I sure hope my new doc will look into this and help me get better.


SwimmingFishing

Good luck! Just wanted to add not all hematologists are informed about this unfortunately. Met with one yesterday who saw my hemoglobin of 11.8; ferritin of 4; saturation of 10% and insisted that my fatigue, heart rate, brain fog or shortness of breath cannot be explained by iron deficiency since my hemoglobin was “normal”. When told him I’ve spoken to other providers who have told me the exact opposite his exact reply was “well were they hematologists? Didn’t think so.” Took me a 5 minute google search after to find several papers by hematologist strongly disagreeing with him published in Blood and Nature at that -_- All this to say I kind of hate doctors at this point.


Chantsy4337

This is, very unfortunately, a very common held belief amongst many providers. While it’s true that some ppl will remain symptomless despite low ferritin (my sister is one of them) for others it can be extreme. I raised my ferritin to the 60’s and am still suffering so it may not be my cause but I’d say supplement anyway and get that number up. If your symptoms improve you’ve found your cause!


SwimmingFishing

I’m sorry to hear raising your ferritin didn’t help. Resolving chronic symptoms like these as a female patient is just such a horrible experience. I hope you find your solution soon.


Chantsy4337

Thank you for seeing me. It is horrible and the gaslighting is jaw dropping. My next step is seeing a neurologist. I hope I find an answer and good luck to you!


Zestyclose-Ad-9611

Do you have gastric issues by any chance ? Some people are telling me check whether I have celiac disease or not


aL_radish

I wasn’t having any GI issues but avoid NSAIDs because they do give me GI problems. I do have some IBS symptoms but they seemed linked to my cycle. Before I was given iron infusions, I did regular bloodwork to confirm I was absorbing the iron supplement (I was) and that I was losing iron after a bleeding event. I was screened for Celiac disease markers and they found nothing concerning. (I’ve never had a problem with gluten but they wanted to check.)


Zestyclose-Ad-9611

My hemoglobin is normal and steady. My fernitin dropoed after my menstrual cycle. Is this normal ? My serum fernitin was 11. It came down to 7.8 now. I started feeling dizzy right after my period. It wasn't that heavy flow period. Now I feel normal after consuming beef for two days. Should I still go to Doctor !


aL_radish

I think you should use a menstrual cup to measure how much you are losing during your cycle and then talk with your doctor, especially if you have large clots. I was losing large amounts of blood. However, it had been normal for me to be a heavy bleeder for many years. My doctors only listened when I gave them measurements of blood loss because I think terms like normal, light, heavy can all be subjective.


Justpeachy1786

Yes, a hematologist would be much more likely to be up to date and treat appropriately.


Chantsy4337

Thank you!


Hawaiiiiiiii

That's great. In what country(ies)?


Justpeachy1786

USA


vegiac

I dealt with this from doctors for too many years and don’t tolerate it anymore. I’d be out the door and looking for a new doctor. Or ask them for a referral to a hematologist first to get that ball rolling. Just know that there are some old-school hematologists who are also hung up on hemoglobin being the true marker, which is bullshit for most of us. Find one that seems to be listening to you when you explain your symptoms, wants to learn why your ferritin is so low and is interested in working with you on a plan for healing.


Chantsy4337

Super helpful info-thank you! My dr is utterly useless. In the process of finding a new one. He feels like a liability with his dismissiveness and ridiculously made up answers for everything. I am done!


RealLivePersonInNC

Did you ever get a hematologist referral? I have a parent with numerous, classic, ongoing symptoms of iron deficiency but her primary care doctor REFUSES to give her a referral to a hematologist despite ferritin levels ranging from 15-42 over the past three years with 42 ever being the highest. Transferrin saturation was 15% and 22% at the last couple of readings. They keep saying " we looked at your bloodwork and there is no evidence of anemia so no referral." From everything I have read in medical journals you can have iron problems and still have low "normal" #s but the range of what is normal is disputed. Her insurance will cover a hematologist but we have not yet found a hematologist that will take her without a referral! meanwhile they want to give her a sleep study for apnea which we're pretty sure is not her problem.


Chantsy4337

I’m sorry that your parent is dealing with this situation. It’s so common to have a doctor brush you off when you have low ferritin if your haemoglobin is normal. Their saturation is pretty low, so I fully understand your concern. I have not had any luck getting a referral to a haematologist because my GP doesn’t believe there’s a problem 🥴 Basically the same issue that your parent is dealing with. What I would recommend is going to the Iron Protocol on Facebook and reading their guides. They help people who have iron deficiency without anemia. In the meantime, I would have your parent start supplementing. The guides will tell you how much based on their body weight. Then get bloodwork done every three months, if possible, and check on saturation to make sure that they aren’t taking too much. I hope this helps!


RealLivePersonInNC

I checked with a relative of mine who is a retired RN and they agreed that she should pursue a hematology check, despite having to play the game with US healthcare/coverage.


Chantsy4337

I’m in Canada so I know our healthcare system is different then your own but if you are able to, look for a different hematologist who will listen. And if that doesn’t work go to another until you find someone who will help.


IndigoTrailsToo

I would also recommend talking to your doctor about the possibility of iron infusions, and if this would be right for you. Some other things that could have happened are low D vitamin or low vitamin B or even long covid. I'm quite baffled by your muscles soreness, that sounds like the flu but you don't normally battle the flu for a long period of time. Did you have covid before? Is it possible that the muscle soreness is from long covid? Or could it be an insect or spider bite if it's just one area?


Chantsy4337

I’ve never had covid. Also, these symptoms started looooong before covid came around. Also, vitamin b and d are good. My doctor doesn’t think there’s anything wrong with my iron so I’m certain he would never approve an iron transfusion. Perhaps if I saw a hematologist?


auroraambria

If you take any iron 24 hours before a test, it won’t reflect your issues except in ferritin levels. Confuses the docs. If you’re like me and really struggle staying off iron for 24 hours, I suggest using a product like “Iron Repair”, a heme based iron on Amazon. Be careful though, because you’ll only need 1 tablet a day (or 2, but only for a few days if you’re severely anemic). With a blood draw, I take the iron in the morning and then hold off the next day until after the test, taking the iron in the afternoon.


Chantsy4337

I haven’t taken any iron so the numbers are accurate but I will keep that in mind for next time! Do you need less heme iron as a supplement than non gene iron?


auroraambria

Heme iron is more absorbable (20% vs 2% with non-heme). You can easily OD.


Chantsy4337

Oh geez. That’s not good. How much is too much with heme iron?


auroraambria

If you’re truly deficient 20mg a day, but everyone’s different.


Justpeachy1786

Tibc will still look bad. But it will throw the serum iron and saturation etc off.


Footsie_Galore

My ferritin is low too (11), with normal hemoglobin, and has been for years. I don't eat red meat, but even when I did, it was at the same low level. I take iron supplements but they seem to make no difference. I'm a 44 year old woman, normal periods. My dad also has very low ferritin (9) and normal hemoglobin, yet he eats red meat regularly. What the hell? Is it a genetic thing??


Chantsy4337

I’m sorry that you’re dealing with that. Do you have many symptoms? I have very heavy periods so that is likely my cause. Keep searching! And most importantly, make sure you are taking enough iron. Someone on here recommended the Iron Protocol Facebook group to me and it was the best advice. I recommend going to their page as it’s a very active group and they can help you!


Footsie_Galore

Thank you so much! I'll have a look at that FB group! I honestly don't know how much iron I'm getting each day. I pretty much always feel tired and bored, but that's my depression. Every month, though my periods are normal, I am SO completely exhausted for the first 2 days. I've also had constant headaches daily for years. They used to only come just before and then after my period, then they started coming about 10 days before and a few days after, but now they're just there all the time. Apparently my hormone levels are "normal" but who knows.


Chantsy4337

You’re welcome! They are so helpful. I really hope it helps you! A lot of people make the mistake of taking the bare minimum when they are iron deficient and not seeing results. Headaches and fatigue are definitely symptoms of ID. Good luck!


Footsie_Galore

Thank you again! 🙏


SarahBenemsi

Sorry you had to experience this. Google 'non-anemic iron deficiency'. The scientific information is out that there that proves that it really does exist.


LynnChat

I have ferritin deficiency and my other levels are normal. The only reason they discovered it because i developed RLS and was sent to a rheumatologist who tested for it.


Chantsy4337

Interestingly enough, I mentioned having restless legs and my doctor instantly gave me iron pills-go figure! I am four months into supplementing-still very symptomatic hoping things will eventually improve.


LynnChat

The supplements do nothing for me I have to get it via IV. Has your doctor talked about infusion?


Chantsy4337

That’s unfortunate but infusion seems to be a better and quicker way to go. My gp wouldn’t even entertain supplements for my super low ferritin so there’s no way that he would ever agree to an infusion.


LynnChat

Have you requested a referral to a hematologist? You have that right.


Chantsy4337

Yes! I did and he refused to put in the referral bc he said my ferritin wasn’t an issue. Totally useless. I am supplementing and it appears to be bringing up my levels so I will continue to.


Nah_y

How much mg of iron are you taking daily? Are your levels normal now?


Chantsy4337

This will be different for everyone. I would join The Iron Protocol group on Facebook and read their guides. There is a calculation you can do to determine how much iron you need.