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?

My 13yr old daughter has this issue. She had a horrendous first period, ending in 28 days of heavy bleeding and 2 pints of blood. In the last 18 months her irons been too high (HB), too low, now her ferritin is too low and been prescribed iron. She’s got a mental block about swallowing iron, so trying to find a nice tasting one. We did have one and it ran out and now had a bad tasting one. She see‘s a paediatrician next month finally, after 7 months of waiting and one cancellation

@Darbs76

My 13yr old daughter has this issue. She had a horrendous first period, ending in 28 days of heavy bleeding and 2 pints of blood. In the last 18 months her irons been too high (HB), too low, now her ferritin is too low and been prescribed iron. She’s got a mental block about swallowing iron, so trying to find a nice tasting one. We did have one and it ran out and now had a bad tasting one. She see‘s a paediatrician next month finally, after 7 months of waiting and one cancellation

Ask for liquid iron. It tastes fine, like sweet generic flavour. You can get a bit of an iron aftertaste, but if you put it into orange juice you can avoid that!

[quote Greeceisthebest]@Ilovepotato unfortunately NHS threshold for infusion is very high, you might need to go private.[/quote]
I've had to get privates tests done before so that's not surprising. I have an undiagnosed autoimmune disease (undifferentiated so they call it) maybe I'll kill two birds with one stone!

Yes we have liquid iron but the one I have tasted vile. My daughters teenage years are being ruined by this, she’s exhausted all the time, pale as a ghost some evenings (and she’s of mixed heritage so clearly not meant to be that pale). She’s dizzy, so tired, so many symptoms. I wonder if a private doctor would give a child an iron infusion? I’m happy to pay. See what the pead says in 2wks time I guess. Her irons been too high also so don’t want to make things worse

Another part of the puzzle is that for some reason, as ferritin numbers get lower, women often experience heavier periods. Yes, heavier - so losing even more of the blood that they can barely replace from their ferritin stores.
It can be a vicious cycle once the ferritin gets low. You lose more blood, and it’s even more difficult to climb out of the iron deficiency.
Iron protocol Facebook group has info on dosage and lots of links to clinical research, if that’s your bag. Essentially you need to take quite high doses of iron in order to overcome an iron deficiency, or have an infusion.

But as some people cannot take high doses - plus the risk of iron overload - you need professional advice about the right amount to take for your circumstances and body weight. Taking too much iron is also very dangerous.

Breathlessness
Mind fog- difficulty processing info and memory loss
Dizziness and vertigo
Leg cramps/ restless legs
Heavy legs, worse in morning
Pain in Achilles’ tendon
Tinnitus after exercise
Thinning hair on head
Nails that are too weak to grow
Depression and/or anxiety
Insomnia
Heart palpitations
I have all of those. I have been trying to raise my ferritin for at least 5 years but it has never got over 18. I have lost half my hair. My doctor tested me for coeliac disease and I don't have it. No other tests were offered. I'm not vegetarian and don't have heavy periods so I'm not sure what else to do! It's frustrating that so many of this have been told that ferritin doesn't matter!

@rifling please do not live like this, you need to get to a specialist. Insist your GP refers you. Unfortunately you will likely have to pay and it will be c.£1000 to get an iron infusion and tests. I visited the Cambridge Iron Clinic. You could always email for free advice? You could also be B12 deficient.

Testing for coeliac is not enough- it could be another intestinal issue or autoimmune disease.

Please don’t leave it and put up with it!

@Greeceisthebest hi there :) just wondering how long it takes you for you to
feel better ? Xx

@gymbummy hey there! How are you
now ? Has anything helped
you? Xx

A lot of people here describe really rubbish experiences- but don’t lump the whole NHS and all GPs together please!

All GPs I know (and work with) would automatically check coeliac antibodies and take a decent dietary/ lifestyle/ family/ autoimmune history… and not be dismissive.

Pushed for time, over stressed, under resourced and having a minor nervous breakdown trying to keep everyone ‘safe’ within the system we are working but not dismissive.

In my area we have an excellent NHS iron deficiency clinic: OP maybe worth checking in your area? Here it’s called iron deficiency management service- I’ve attached a link (openly available online) which cites criteria. May not be similar elsewhere but similarly your GP may not be aware IF one exists.

Re iron infusions- in the NHS the are absolutely available- but largely for people who really cannot tolerate oral supplements. Also not to supplement lifestyle choices re diet, not taking supplements for various reasons etc.

Any iron supplement should always be taken with some vitamin C: vastly increases the absolute across the gut. But meat is indeed the most freely and quickly available dietary source for your body to use (as best I know anyway).

Anytime I have referred to this service it’s been exemplary- not only sticking the bandaid on but looking into the complexities of the iron profile and seeking an explanation.

nssg-test.oxford-haematology.org.uk/documents/15/how-to-refer-to-the-iron-deficiency-management-service-info-for-gps_L95xP4v.pdf

@gymbummy where in the sputheast are ypu? I'm also south east. Suffering with low ferritin and other things and awful symptoms:( drs don't care