Ferritin

[Topes009]

In my quest to understand ferritin and the huge range that is ‘normal’ and why with a level of 38 and more recently 40 I was advised by one GP that it was ok and another, more experienced GP that levels below 50 can cause exhaustion I have found the attached, very interesting reading

ncbi.nlm.nih.gov/pmc/articl...

[Hidden]

I had to go private for an iron transfusion. GP wasn't interested because I wasn't anaemic.

The consultant who did the transfusion said that a ferritin level of:

•less than 15 was total deficiency

•30 was considered 'very very low'

•less than 100 is very hard to treat yourself

It was eye-opening in terms of how the NHS views ferritin; unless you're totally depleted of iron it's 'normal'.

[Topes009 in reply to Hidden]

Did the transfusion alleviate your symptoms Hidden ?

[Hidden in reply to Topes009]

I'm not sure yet, it's only been 4 days. It can take up to 6 weeks to feel an improvement as the iron makes its way to where it needs to be. Essentially I'm waiting for my body to soak it all in!

That said, I can now take a deep breath through my nose, which has previously been impossible because I just didn't feel like I could get enough oxygen unless I took a deep breath through my mouth.

And it has always been intolerable for me to sit with my feet on the floor, even at the dinner table I have to sit cross legged. I've always sat with my legs raised and draped over the arm of the sofa. I've noticed it's become less intolerable!I'm wondering if it's a sort of variant of restless leg syndrome, which can be caused by low iron but I'm just speculating.

I'll report back in 6 weeks!

[Topes009 in reply to Hidden]

It sounds positive so far. Sending good vibes for you to soak up all that iron!

[radd in reply to Hidden]

plant_lady,

My legs are always curled up underneath me or cross legged in front of me too. How bizarre, I thought I was the only one who had this habit when sedentary, except for when I’m driving of course! I always have too much iron though & restless legs.

[Hidden in reply to radd]

You're definitely not alone! I'm tall and my legs are long so I've always assumed it was poor circulation but even when I was able to exercise it didn't go away so now I wonder if it's iron related. It could of course be something else entirely!

I'll report back in 6 weeks. That way I'll know for sure... ish.

[Catlover3 in reply to Hidden]

My daughter's ferritin level is 18 at the moment and two doctors that she has seen at our practice say that this is fine even though she is exhausted and has numerous health issues!

[Hidden in reply to Catlover3]

They've always said mine was fine at 15 or 18. It's never been higher. Given that the range is (15-350) I do wonder how they can possibly think 15 is 'fine'. Especially as the consultant explained that less than 15 means you have no iron stores left at all. 🙄

Has she had an iron panel? Or a full blood count?

[Catlover3 in reply to Hidden]

Hi. Her red blood cell count is above range 5.31 (3.8-5.2) but nothing was said about this. She has ME/Fibromyalgia, postural orthostatic tachycardia, stage 4 endometriosis, hydradenitis supprativa, migraines. She seems to add a new condition every couple of years!

[SeasideSusie Remembering]

That's an interesting article and illustrates how complicated iron can be. I notice there's no mention of Serum Iron which is a shame. My ferritin is on the lowish side and I don't seem to be able to raise it, but my serum iron and saturation are good and when I experimented with supplementing iron it raised my serum iron but not my ferritin. If I'd continued my serum iron would have gone over range. As he says "I am convinced that there is still a lot to be discovered about iron metabolism."

[Topes009 in reply to SeasideSusie]

Yes, so much to be learnt. And so much disparity in the way it’s treated between different GPs and endocrinologists.

[Lynneypin in reply to SeasideSusie]

This is similar for me. Low ferritin - but over range iron and transferrin saturation ☹️