Ferritin ALWAYS low but other iron tests ok or too high?

[AbsentmindedWoman]

I've tried and tried to understand, but seem to have some kind of mental block when it comes to understanding the complexities of iron especially the interactions with other deficiencies like low B12 and vitamin D.

But if anyone could help my dim brain make sense of this I'd be so grateful - my ferritin is always low, generally in the 30s and sometimes dipping to 20s.

My doctor advised some iron, which I got - but after taking them for just about a week got scared of taking more because another test (from a different doctor) came back showing slightly elevated hematocrit, and haemoglobin normal but on the high end of normal.

So if the ferritin which as far as I can understand is the iron store, is low, but the rest ok or high - does that kind of balance itself out somehow? Ie it doesn't matter in and of itself, as long as it's not affecting haemoglobin? And I don't need to be concerned with raising the ferritin?

Your body will do everything it can to maintain its red blood cell iron levels.

When you take iron, it will show up as higher haematocrit and haemoglobin, but it takes longer to start storing it as ferritin.

My haematologist said that in women of child bearing age, she always wants to see a ferritin well over 70, nearer 100.

You need to take the iron, consistently, for at least 3 months, before using another test.

Ferritin levels are really important, and you can experience all the anaemia symptoms long before your hb levels drop.

Think of it as a savings account. You will always make sure you have enough in your current account, wherever you have to take it from, and the money will always go in the current account first.

If, after all the costs have been met, you have any left over, it can sit in the savings account for emergencies.

Thank you @lborgia it seems like I still need to work on it then after all and not let it go as I was hoping

I do have lots of anaemia symptoms - and actually, noticeably more tired since about Christmas really - but am due bloods for thyroid and was just thinking maybe I needed to up my medication there.

Ah well! It's all such a bloody pain in the arse.

Ferritin levels are really important, and you can experience all the anaemia symptoms long before your hb levels drop.

I wish this was more widely known. I've had low ferritin for literally years but so many gps said it wasn't an issue. And my doctor now who is very good overall and recommended the iron didn't explain it as clearly as this. It makes more sense to me now.

Yes. It’s massively misunderstood and so many people (often women, let’s face it) being dismissed with persistent fatigue, and all the other symptoms of iron deficiency.
A great resource that goes into detail on iron supplements , optimal absorption, etc. Is the iron protocol Facebook group.
The type of iron supplement you take, dosage, time of day, and what other foods, drinks and supplements you take around that time is really important.

I'm in nearly identical situation, ferritin is 7. I am supposed to start iron infusions on Thursday. I tried oral iron and my hemoglobin and hematocrit got too high on every other day supplement plus had severe gastric upset with it. I'm just petrified of them starting an IV line on me and hoping they can find a vein.

I have had low ferratin for years.

I also have haemachromatosis so my iron levels are always high. Nobody seems to know why.

Same situation, Lowestt ferritin has been 7 and recently 10. I’ve had 2 iron infusions, they work brilliantly.

I had breathlessness and palpitations and no one could figure out the problem. It was awful. I couldn’t even walk from the living room to the kitchen without feeling like I was dying.
After a week(!) in hospital it turned out I needed to take ferritin - immediately fixed the problem.

Sorry to hear that you’re suffering, op. I feel pretty much in the dark and bloody fed up with my body so, I hope you don’t mind me jumping on here…Anyone knowledgeable: My ferritin was 6 before Christmas and I tmi couldn’t leave the loo for a week when on iron supplements- think it’s dipping again now so can anyone recommend a gentler solution. My gp didn’t mention the other levels - can you have low ferratin and normal everything else?

Yes, my iron levels were absolutely normal but my ferritin was low and I had such severe symptoms

@Purplepeoniesdroppingpetals - you need to pester for further treatment. Infusion unless you have reasons not to. If the GP refuses request a referral to a haematologist.

This is NOT normal, and NOT ok.

The ferritin/ everything else balance is very complicated. Depending on the underlying cause you can definitely have one without the others.

Of course, we're not even expecting the doctors to work out what you're actually dealing with, coeliac, periods, etc etc. Perish the thought. The least they can do is give you a decent sticking plaster.

Ferritin is the most important number as it represents iron stores. Below 40ish is an iron deficiency.

My ferritin has been extremely low for years, between 1 and 6 when they test for it. GP has never been that bothered and iron supplements don't seem to make a difference. I don't feel particularly ill though. Is this normal or am I a medical freak? 🤔 Does anyone else feel normal with extremely low ferritin levels?

Thanks for the info - will pester my gp. I’m heading towards breathlessness again and (this is gross, sorry) I’ve got failure to heal issues with skin and all my gum skin peels off…..back with a vengeance. It’s perimenopause and I’ve got an ultrasound and hystroscopy booked (terrified of that). Nice gp but I felt so ill that she started with are you. Suicidal? Nope just fucking fed up of feeling so ill, so don’t give me antidepressants!

@Willowcat77

My ferritin has been extremely low for years, between 1 and 6 when they test for it. GP has never been that bothered and iron supplements don't seem to make a difference. I don't feel particularly ill though. Is this normal or am I a medical freak? 🤔 Does anyone else feel normal with extremely low ferritin levels?

My ferritin level is 2. I feel normal but I think it is because my body has gotten so used to the symptoms that I don't even recognise them anymore

@TeddyisMydog Yes, maybe we have no idea what normal actually feels like. If we had an iron infusion we might feel reborn. I did once ask my GP for an infusion when my Ferritin reached 2, but she said it wasn't an option on the NHS 😞

Another question for anyone with super low ferritin. Do any of you have normal hair? Mine seems to get worse the lower my ferritin levels get.

It is confusing isn't it. I wish there was a simple way to monitor things too without the mission to get a blood test.
The iron protocol group on Facebook / Instagram is good.
Off for a blood test on Weds, I'm expecting my ferritin is low again. Daily headaches, feeling sick, fatigue.

My ferritin is 22, I feel like shit. So tired I could cry. Breathless even though I'm really fit. Gp was horrible, just laughed at my concerns and said it's in the normal range. Anyone have any recommendations to see someone privately (South East). Sorry to derail but hoping this might help other people too!

Those with low stores - especially under 5 continue to ask your gp for an infusion!! They absolutely are available on the NHS and can be quite life changing.

Thought this was interesting. My ferritin was 3, tablets got me to 23 and GP said to stop taking them.

@gymbummy

My ferritin is 22, I feel like shit. So tired I could cry. Breathless even though I'm really fit. Gp was horrible, just laughed at my concerns and said it's in the normal range. Anyone have any recommendations to see someone privately (South East). Sorry to derail but hoping this might help other people too!

Make a complaint against your GP. If people say nothing and just go private, nothing will improve.

Are any of you vegetarians? I'm coming to the conclusion it's just not possible to get enough iron without meat.

@posey6

Those with low stores - especially under 5 continue to ask your gp for an infusion!! They absolutely are available on the NHS and can be quite life changing.

I'm allergic to iv iron unfortunately

@Gwenhwyfar I was almost veggie, very low meat. On advice of my doctor I went back to eating more meat overall and red meat. But I really think my levels are low again. Blood test on Wednesday so will see. Millions of people round the world are veggie aren't they and they can't all have low iron...