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?

[quote Willowcat77]@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 😞[/quote]
I'm actually allergic to iv iron, in pregnancy I had to have blood transfusions as baby was just rapidly taking all my iron
Feel slightly better now that isn't happening but I'm exhausted all of the time, more than just newborn exhausted like I feel it in my bones.
I'm still taking iron tablets but they've never done much before x

Reading this with interest! My ferritin was 5. I’ve been taking iron tablets and it’s risen a bit but is still on the low level of normal apparently. I thought I was feeling fine with it all but thinking about it I’ve had a bit of dizziness which I put down to the after effects of covid. Also my hair isn’t as thick as it used to be so maybe that’s a sign too.
Do other people take one iron tablet a day? The doctor said studies have shown one tablet can be more effective than 3…

My ferretin is 30. No idea why. I eat plenty of red meat but am always tired and anxious. Put it down to being a young mum working full time but it's actually debilitating. I've been prescribed lexapro twice in the past and not taking it now as TTC but it does concern me that the anxiety could be exacerbated by my iron levels. Also agree with PP it's misunderstood and misdiagnosed because typically it's a women's problem. I've been told I'm borderline anaemic for a decade but the advice has always been to just keep powering through with diet and supplements.

My ferritin levels tend to be really low and I hit some sort of crises point at the start of the year as I stupidly got lazy about taking my supplement - tinnitus, constant heart palpitations, breathless even sitting still, massive fatigue and RLS. My tense of taste went completely weird and I was itching all over.

I've been taking Iron Bisglycinate (often sold as Gentle Iron) and find it's much much easier to tolerate - no nausea, no effect on bowels, nothing.

If I need tests I get them done privately via an online company that sends out fingerprick kits. It's not madly expensive and if you can afford it it's so worth it not to have the faff of trying to pursuade a gp why you need certain tests and actually get an appointment, only for them to claim your ferritin level of 13 is "normal". I also check my Vitamin D annually privately to make sure my levels of supplementation are about right.

I'm not a major pill popper btw, I don't take any other supplements apart from magnesium every few evenings, but I tend towards deficiency with these two things.

Thanks for starting this thread. Mine has been low twenties for years and gp insists that is ok as I’m menstruating despite having very light periods.

It’s so frustrating because all my symptoms (breathless despite being fit, terrible fatigue, brain fog) could be explained by low ferritin. Nothing else is wrong. The last visit she prescribed a podcast for positivity ffs.

I’m sure I’ve read somewhere that iron uptake is better if the supplements are erratic. But I’m just too tired to track the article down or work out if that related to ferritin or not. Has anyone else come across this?

I’m recently diagnosed coeliac but was asymptomatic so unaware I had this. I had low ferratin and would take a course of iron yearly but never knew the cause of why. Need to take VitaminD and calcium now too.

This is just ridiculous.
Yes, complain about GP laughing at you!
Yes, your hair will be worse, because your body is desperately diverting iron to essentials.
Yes, it's possible to feel normal but I suppose it might depend on your version of normal? Are you doing exercise 3-4 times a week, sleeping well, working full time, looking after small children? Because I could manage, but I certainly couldn't have done all that.

There's always a reason your number is low. It's not just "one is those things".
The most common is this like coeliac and ridiculous periods, but it can also be things that over time add up.

If you have heavy periods, and eat a vegetarian diet that includes a lot of legumes, or drink tea/cola etc near your food. All sorts of things affect absorption, but it's far more likely that it's your gut and /or bleeding.

Anyway.

I'll get off my soap box.

Are you doing exercise 3-4 times a week, sleeping well, working full time, looking after small children?

There is NO WAY I could do all this. I mean, I knew my energy was crap but this is really quite sobering.

Agree you kind of adjust and get used to a complete lack of energy and forget what it's like to have a reasonably normal amount

[quote Reluctantadult]@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...[/quote]
Why can't they? Low iron is a huge problem around the world. Maybe not so much for men who don't need much.

Mines between 10-12
I have been taking hemeplex it's the only iron supplement that doesn't give me horrible stomach issues.

"I’ve had a bit of dizziness"

What kind of dizziness? I've been feeling dizzy when getting up from sitting down, which I know can be low blood pressure, but mine is more on the normal-high side.

@Gwenhwyfar

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

I'm not vegetarian, but go months and months eating very little meat - maybe once a month.

Last night, I had the most overwhelming need for a burger after feeling really odd and unwell all day. Really tired and wired and unpleasant. Probably placebo, but felt markedly better after said burger and slept better.

I really need to look at making sure I eat more meat. I just don't think I absorb iron from veg.

There’s a disorder called iron deficiency without anaemia which is scantily researched (mostly affects women).

www.rcpjournals.org/content/clinmedicine/21/2/107

I’ve always had low iron and normal haemoglobin since a teenager, probably due to heavy periods. A few years ago when doing IVF tests they noted my ferritin was 22 and I spent six months trying to raise it with strong iron supplements and eventually got it to 70.

A number of annoying issues (nocturnal foot cramps, twitching eyelid) disappeared once my ferritin rose and during pregnancy they’ve returned as my iron stores drop - still not anaemic though!

You don’t get ferritin as part of a full blood count so do insist to your GP that they test this as well.

Absent, I stopped being a strict vegetarian a few years ago, but I can still only eat meat in certain types of food. I think it's been almost a year since I had any!
I've been tracking my food intake with My Fitness Pal and cooking from scratch more than ever and I can see that I never get anywhere near the amount of iron I need (except through my multivit).

I was tested for ferritin many years ago. It was 40, which my doctor said was fine, but I'm starting to think seeing the optimal numbers mentioned here.
I also really suffered the last time I gave blood. I got a blood test afterwards, but it didn't include ferritin.

"You don’t get ferritin as part of a full blood count so do insist to your GP that they test this as well."

Cross posted there.

@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!

Your GP is a dickhead. 22 might be in their official 'normal' range but I was told many people experience hair loss if ferritin is below 70.

@Scianel could you share which company you get your finger prick tests through? I had some tests through the doctor and a nutritionist a couple of years ago and would like to check where I am now, without the faff of dealing with the doctor again!

Did had low,ferritin which was dismissed as due to being veggie and heavy periods. Turned out she had coeliac disease. Her ferritin has improved since going gluten-free.

@BulbasaurusRex sure, they're called Thriva.

I am frustrated reading these comments. A ferritin level of 2 and no treatment !!!
I really encourage posters to do their own research, there is so much out there if you look for it.
The most commonly prescribed iron supplements have dreadful side effects and so people often stop taking them. Then they think they don’t work!
I buy heme supplements from the USA as they are impossible to source here. After a few days of those plus 2 spatone a day I am seeing the tinnitus and anxiety reduce. I have much more energy. It’s extraordinary really (although not actually - when you realise iron deficiency literally puts your body in starvation mode). We musnt accept it!!
I also use thriva to monitor my iron levels.

@TiddleTaddleTat absolutely a decent form of iron that is actually tolerable makes so much difference. I think so many people stop taking their supplements because the side effects of the standard iron tablets are so unpleasant.

I'm another one that is baffled at how you're actually meant to eat enough iron daily. I know the RGA is 14mg for pre-menopausal women and it's actually 20mg in a lot of other countries. There's just no way I can manage that and I eat meat.

I guess liver is a good source.
But the only way to raise your ferritin if you are iron deficient is by eating or more likely supplementing , more iron than you need it’s like having an overdrawn bank account. If you keep taking money out (to run essential bodily functions) your levels will remain low (and overdrawn) until they are topped up by a sustained and prolonged effort to raise your balance well in excess of what you actually need for basic functions.

Lots of people on this thread are reporting issues to do with autoimmune disease, which causes iron deficiency. Eg the peeling gums! It’s basically where your body attacks itself, there are 70 conditions and women are at highest risk. It’s very common. You probably have other deficiency you don’t know about too as it’s all linked to the gut.

Please get yourself checked by an expert.

www.cambridgeironclinic.com/

You need to find the cause of your iron deficiency. Most common causes are...

Autoimmune disease
Heavy periods and gynae issues
Vegan or vegetarian diet
Having children close together
Cancer