Child very low ferritin & v. symptomatic

[Hyperemesishell]

I wonder if anyone has any advice.

My little boy is 5, he had bloods in August and his ferritin was 4. He had a 3 month course of oral iron.
He had bloods done again last week and ferritin still the same.
He isn’t anemic despite the low iron.

They have suggested another 3 month course of oral iron - should we be pushing for something more?

He is breathless, racing heart, very pale at times, fell asleep at school last week despite sleeping a minimum 12 hours every night.

… any advice really welcome x

Did they do any other bloods? Like checking for any autoimmune issues or b12? There must be a reason why he isn't absorbing the iron. I hope your son feels better soon x

My thoughts exactly.

Back in August they did everything - Coeliac was negative, thyroid fine, they never mentioned B12 but assume it was normal as nothing ever flagged back.

He was having tests for diabetes at the time so they were very thorough - all the diabetes tests came back ok too.

Is your son on multivitamins at all? I think vitamin c helps absorb iron more easily. I would definitely be asking for something more x

No but I’m going to get him some; he eats SO well so I’m just so surprised that after a course of oral iron and with a really good diet it’s made no difference.

Dairy products prevent absorption of ferritin from what I remember. You may already know this but just in case he is drinking milk etc with supplements it may be stopping maximum absorption.

That is extremely low iron, OP, as I'm sure you're aware!
my friend's toddler son had very low iron and he was given intravenous iron. He was like a different child afterwards, totally transformed.

As someone else pointed out, are they looking into why he isn't absorbing the oral supplements?

It seems very low to me, I did think they might suggest an iron infusion but they’ve just said another course of oral iron for another 3 months. I feel awful that he’s so symptomatic and that in another 3 months he will still be in potentially the same position.

No; they haven’t said they are going to look into it further. I have booked a private appt but can’t get him seen until 25th March.

Hi there, my daughter 12 at the time had low iron that didn’t improve after iron tablets.?
She too had a racing heart, very pale and always sleeping but other symptoms too.
She was diagnosed with crohns disease.
I am not suggesting that is what your child has but your gp should no way just try to keep on with the iron tablets. Should be referring your child to be checked out as to why he isn’t absorbing iron.
Unfortunately too often us parents have to be our childs voice and be heard.

Hope you can get this sorted sooner rather than later. Xx

I would be pushing very hard to get answers as to why he isn’t absorbing iron. The tablets are useless if his body isn’t absorbing iron.
breathless, racing heart, exhausted….. those are serious symptoms.

Thank you, I’m really glad you wrote this - his paternal grandmother has crohns.

Did your daughter have other symptoms outside of the low iron at the time?

We’ve got an appointment with a private paediatrician next week, getting nowhere with the NHS unfortunately. It’s taken them a week of me chasing them to even get a prescription issued.

She did yes. She had aching joints, could only eat small amounts of her meals because after a few mouthfuls she would feel full. Very occasionally she would have stomach pain after eating. She never really had the bowel symptoms except she would open her bowels at least twice a day and it smelt awful and contained mucas. Mouth ulcers that never healed.

Although we didn’t want the diagnosis having answers was such a relief. Treatment for inflammatory bowel disease has come on heaps and bounds.
Once on treatment she soon recovered and went straight into remission. That was 7 years ago, she is 19 now and is having the most wonderful normal active life. If anything her diagnosis has been the making of her with regards as to living a great life. Xx

I don’t blame you at all going private because that was going to be our next step if she wasn’t going to be referred.

Please keep in touch with how it goes.

All the very best. X

Thank you so much, I’m so glad to hear your daughter is doing so well - like you say nobody wants a diagnosis especially not one like that but much better to know and get them the treatment they need.

Definitely get B12 checked, speaking as someone who is currently going through this and my ferritin is also 4! It’s miserable, bless him!

Thank you - I will definitely ask for his B12 to be checked. Hope you’re feeling better soon!

I was also coming on to say that my DD has Crohn's (as did her paternal great grandmother)
Before diagnosis she was also pale, fast heart rate, breathless, and low energy from anaemia as well as in her case diarrhea with a distinctive smell and quite bad breath, brittle hair etc.

I would definitely ask for a fecal calprotectin test.
DD had an iron infusion btw, and with treatment for Crohn's has managed to maintain her levels since.

Brilliant advice thank you, I’m really hoping the private paed will be thorough but I’m noting all these things down as points to discuss with him, especially because of our family history.

So glad to hear your DD has managed to maintain her levels since 🤞🏽

Hi there,

I am having the same issue with my little one who is nearly 2. Still has very low ferritin even after having a course of iron supplement for 3 month. Do you mind me asking how it went with the private paediatrician? Hopefully you managed to get more success in finding the issue and I hope he is feeling better!

We never got to the bottom of it. Private paed was convinced there was going to be an underlying cause but found nothing of any real significance.

Anecdotally since the second three month course we’ve seen a real difference symptom-wise. The paed did say in some cases it just takes longer to return to normal.

Really hope they get to the bottom of it for your little one, it can affect them so much and is so debilitating.