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Original poster

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

87 replies

AbsentmindedWoman · 22/02/2022 20:59

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 Hmm 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?

OP posts:
TiddleTaddleTat · 23/02/2022 22:14

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

lborgia · 23/02/2022 00:19

@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.

lilyboleyn · 22/02/2022 23:07

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

Purplepeoniesdroppingpetals · 22/02/2022 22:34

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?

lilyboleyn · 22/02/2022 22:24

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.

JoeMaplin · 22/02/2022 22:12

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

BoredZelda · 22/02/2022 21:49

I have had low ferratin for years.

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

EKGEMS · 22/02/2022 21:46

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.

TiddleTaddleTat · 22/02/2022 21:38

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.

Original poster
AbsentmindedWoman · 22/02/2022 21:32

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.

OP posts:
Original poster
AbsentmindedWoman · 22/02/2022 21:28

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 Blush

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.

OP posts:
lborgia · 22/02/2022 21:12

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.