High Ferritin

[spiros]

I am 25 years old. Ten years ago, i found that my ferritin is high, around 500-600. For 8 years it was on this levels. I didn't searched for the reason until last May when i found that the ferritin level went up to 1500!!! I saw a pathologist and we started making some tests to found out if there is any damage done on the organs. We didn't found anything. So then I took a gene mutation test for hemochromatosis. I waited for the results for one and a half month. Today they informed me that there isn't any mutation at HFE, TFR2, FPN and HJV gene. Tomorrow i will found out the results for mutation on the HAMP gene (Hemochromatosis type 2b). Last week ferritin level was 1000. If this test is negative and I don't have hemochromatosis, what's next ? I am very confused...The doctor says that if it isn't hemochromatosis we must concentrate on liver and find out what causes so high ferritin levels...Inhipe for the best...I am very anxious and all this waiting is killing me...

[PMRpro]

You may find this interesting

medscape.com/viewarticle/81...

Ferritin is often an indicator of inflammation present in the body and if that inflammation has been present for some time the levels can get quite high. Haemochromatosis has been ruled out - now they will look for the other options.

It's no use me telling you to not be anxious, you do have something - but there is a wide range of things that lead to raised ferritin. Try to keep calm in the meantime.

[spiros in reply to PMRpro]

Thank you very much! I am anxious because I have these high ferritin levels for ten years now...and on the exams we didn't find an inflammation...maybe we can't see it yet...There is a possibility for hemochromatosis, if there is a mutation on HAMP gene, tomorrow I will found out...

[PMRpro in reply to spiros]

There are forms of inflammation that you wouldn't necessarily see. I suppose a nice result tomorrow would be a mutation on the HAMP gene! Good luck.

[RichardE]

Hi. I don't have Lupus, but I do have HUVS which is very similar.

I'm quite interested in this as my ferritin has been high (around 600-700) for a couple of years now. Haematology have investigated and whist I am a carrier for the haemochromatosis gene I don't actually have the condition. Although I have been told that carriers can still show signs of haemochromatosis, which isn't very helpful !

As PMRpro says, I've read that high ferritin can be an indicator of inflammation and SLE disease activity but I don't appear to have any ongoing inflammation and certainly I'm symptom free, in a good drug controlled remission with all my other blood markers looking fine.

So at the moment we're just monitoring things as I've been told that at this sort of level there's little risk of organ damage. But I believe that if my ferritin level rises to above 1000 we'll probably look at treatment with venesection (simply taking a pint of blood as in a blood donation). My haematologist and rheumatologist seem quite relaxed about the situation so I'm not worrying too much about it at the moment. But I do understand your concern and it's certainly something I always ask about at appointments.

If you've not seen it, there's quite a good NHS Choices page here about haemochromatosis :

nhs.uk/Conditions/Haemochro...

All the best with the results of the HAMP test, let us know how you get on. And I would be interested to hear whether anyone else has experience of this as a symptom of lupus.

[linda96]

Hi, couple of months ago my ferritin was measured at over 1100. I also was tested for haemachromatosis and Iv been informed, twice, that I do not have it. Iv done a bit of reading on it as Iv been puzzled myself about this random inflammation that this high ferritin belongs to.

Iv come across the fact that the body stores iron in different ways. In some people, probably us, some of these iron stores don't work too well so the iron keeps circulating around the body. There's a MTHFR gene impairment involved, I believe, which stops the iron being stored. And/or possibly used. And possibly problems excreting it.

I'm awaiting results of a gene test which hopefully will confirm or dispute this. Iv ditched the idea it's inflammation, it just doesn't tally with what's actually happening. I have lupus, fibro, APS, u/a thyroid, CFS and a few other things.

Iv always has problems with iron, even aged 7 I was given iron tablets and this continued into adult hood.

[Starbright3x]

High ferritin can also be a symptom of Stills Disease..or Adult onset Stills Disease, which I believe is the more adult form of Juvenile arthritis. Stills disease symptoms range from fevers, joint pains, sometimes sore throat that isn't related to cold or flu , and an evanescent rash that comes and goes.