Chronic high Ferritin

[MelCakey]

Hello, I wonder if anyone else has had high serum ferritin for a long time. I went to my GP last Nov with bad fatigue and odd under-skin reddish rash on my ankles which I never ended up showing her as she was much more interested in my low weight and BMI of 16. Ended up having blood test that showed high SF of over 800. A couple of weeks later another test shows SF is 936. T-Sat is 38%. My medical records show it's been high for ages - almost 500 in 2012 and steady rising everywhere since.

After new year I paid for private HH genetic test and am only carrier of H63D yet have so many symptoms of HH that have been going on for more than 20 years.
Please, does anyone have any ideas or have similar issues..?

Have you had any more specific follow-up blood tests like a transferrin uptake test?

hello Autumn Crow, transferrin saturation is 38%... Is that what you meant?

There doesn't seem to be a TIBC result in my records, only the T-Sat one...

The NHS tends to give a transferrin test first and if it's within normal range which yours is) then they don't do TIBC as well, as their position is that it is basically measuring the same thing.

I've had ferritin of >500 and a 'normal' transferrin follow-up, and it was put down to inflammation in the end (not surprising as I have auto-immune disease such as psoriasis and related arthritis & fatigue).

Would having inflammation make sense to you? The fatigue and rash might indicate it?

Well, the rash has been here only since last summer and it's not really a rash as such cos it's under the skin - it strangely looks a little bit like love-bite marks around ankles but starting to veer onto the tops of my feet. Very peculiar! Also I do have multiple sclerosis since 1987 (just 17 when diagnosed) so unsure if that inflammation would put SF levels this high..? Am worried that high SF for this long is damaging - I've had mystery sun-tan on face, chest n forearms for years now - presumably from high SF...

Just spotted Serum transferrin last year was 3.1 so normal!!

You may have one of the rarer haemochromatosis genes, that could be the problem. H63D and C282Y are just the most common ones, but there are others that can be tested for. Might be worth looking into as untreated haemochromatosis is very damaging.

Yes very good point! Tests for rarer types very expensive privately tho - unless GP (or Gastro) prepared to do those on NHS.
I'll be having chat over phone with Doc on Thursday so will see what he thinks.

The skin bronzing is characteristic of haemochromatosis, and rashes are common.

In the meantime, are you able to donate blood? That's the best way to get your ferritin levels going down. Venesection is how haemochromatosis is treated, anyway.

I'm not allowed to donate blood as I have MS. But I suppose they cannot leave me with ferritin high like this so maybe GP will suggest venesection... if SF is high enough to colour my skin surely I'll need treatment..? Even my fingernails have gone slightly golden! Horrible!

Thank you Crunchy!

Thank you Autumn.

This is the case for a relative. Saw specialist because of various symptoms and a sky high iron level suggestive of haemachromatosis; tests showed only a carrier- as are others on our family. Apparently it does happen in some cases that you can exhibit symptoms with only one gene.

Elaeocarpus, yes the HH UK site suggests that so you're right of vourse! Think I'll need further help as ferritin this high is not great!
Thank you so much for your input! 👍

Ah shame, but yes you'd have venesections regardless if you are diagnosed with haemochromatosis. I suggest joining the Haemochromatosis UK group on FB, or maybe calling the Haemochromatosis advice line:

https://www.haemochromatosis.org.uk/helpline

Having such high iron is very damaging and you really shouldn't be left to just get ill with it when it's preventable.

Thanks Crunchy.
I have got a zoom appt with an HH nurse tomorrow (Wed) afternoon - part of the package with the genetic test - so hopefully they'll advise.

I can't help but worry though about having such high ferritin for over 12 years will have done some damage somewhere. I wonder in shock, why it has been ignored for so long!

Thanks so much for your help 🙂

P.S. I have not been diagnosed with HH - I'm merely a carrier of the H63D mutation (Which is the weaker of the two most common).
Although carriers do sometimes load.

Oh I don't know. I don't quite understand what's going on.....

I’ve had high ferritin for nearly 3 years now. At the start it was 3000 but it’s gone lower now. Mine is due to genetics and also I had multiple blood transfusions. I have venesections as and when I can tolerate them as they make me very ill after . Good luck as they aren’t nice.

My ferritin is elevated due to an autoimmune condition causing inflammation but fluctuates, higher and lower. Yours is quite high. I also occasionally get petechiae to the top of my feet. Could MS which is an autoimmune condition cause high ferritin & have you been tested for other AI's like lupus and Sjogrens? Good luck with the HH meeting, I hope you find some answers.

Wow Deebee, that's a huge SF... Sorry to hear. Glad venesection helped - yes, am sure it's horrible to have tho!
Thank you very much for your input 👍

Forgot to mention - MS can cause alight elevation in SF but not yo this extent.

Cherry ripe - funny you mention Lupus - mother has cutaneous lupus and lots of horrible skin probs with that. Actually there's a few AI things on her side of family. rhuem arthritis, Coeliac's, me with MS and both my G'ma's had Alzheimer's.
Great.
Better not mention all this to the kids!!

Thanks so much for your input, CherryRipe! 🍰👍

Oh yeh and also under active thyroid for three ladies on mother's side of family.

@MelCakey
Your welcome. Unfortunately with AI conditions it seems you get one and others want to join the party & there does seem to be a familial predisposition to them. All the best.