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..?

You absolutely can load iron and develop hemochromatosis as "just" a H63D carrier. This is less acknowledged by GPs.

I'd follow some general advice for people who are loading iron such as not using iron cookware, not taking iron supplements including as a part of a multivitamin, not taking vitamin C, avoiding iron-rich foods etc.

I'd also stop all alcohol as it sounds like you have some liver damage.

Haha yes, it's a full on co-morbidities party! 😬

Hello IronLoader - Yes I'm hearing that carriers CAN load.
I don't drink at all, don't eat red meat, use stainless steel pans to cook and take no supplements at all. Only have green veggies 3 or 4 times a week too!!
Have a 'phone chat booked for tomorrow with GP (not my usual one tho) so will see what he says.

If my skin has gone bronze, surely that's a sign of too much ferritin and/or Loading??
Thank you very much for your help 👍

IronLoader - the specialist nurse from HH UK told me today on phone, that he would recommend a Ferris Scan at least and maybe further genetic testing but that Doc may be reluctant so looks like I may have to work hard to persuade...
Hopefully will know more tomorrow.

Just for clarification, how did you end up having a private haemochromatosis genetic test and not NHS- provided? I'm just wondering if that has put you outside of the NHS treatment system if the results are not with your GP?

My concern with a telephone GP appointment is that any yellowing/bronzing may not be taken as seriously compared with if you are right in front of the doctor. I know you can tell them but I've often found that people respond more to something they can see.

Just to add to my post, I suggested the low iron tips as a precaution until you have a diagnosis. You could check this with the haemochromatosis helpline nurse or the GP.

In your position I'd be wanting an in-person GP appointment, a liver scan and a haematologist referral, I think. Sorry I cannot give better advice.

And you can also try the haemochromatosis subreddit, you may get some good advice:

old.reddit.com/r/Hemochromatosis/

I have a relative in your position who it turned out had developed diabetes I think as a result of the iron loading (or is it the other way round). They are also H63D heterozygous. So just something to keep an eye on, one of a very many possibilities but they don't always check HBA1C.

I mean, part of me thinks if you have bronzing you should just go to A&E.

IronLoader - the GP I saw in November wrote a letter to the gastro' dept to ask advice on whether or not to test for HH seeing as my T-Sat was only 38%. I heard nothing by January so it was pure impatience on my part that i asked the HH UK people for a private test then they informed my surgery and me of the result last week....

IronLoader - to continue...

The HH UK people only test for the C282Y and H65D mutations so yes there are lots of other ones too...

I had phone call with a GP this morning and was very close to being brushed off because "high ferritin is not a problem" but after i explained further he's going to make a appointment to go to surgery so I can actually SHOW someone the red rash thing on ankles/feet BUT more importantly is going to refer me to Haemotology because of the bronzing.

So that is good at least!

Thank you for the advice and the link, I'll take a look at that 👍

Funny you should mention Diabetes - my G'ma' had that later in life AND many symptoms of HH but was a lifelong Blood Donor so in effect of course, that was her treatment! I might buy that test from Boots to see if I'm the same as her.

Thank you very much for all your comments and advice. 👍

IronLoader - I keep forgetting to say that GP insists I'm NOT loading cos T-Sat is only 38%! Even with orange skin! He's asked Haemotology if I should been seen...

Chasing my tail here!!

Interesting that Haemochromatosis UK are publishing 2 booklets about the rarer types of HC:

https://www.haemochromatosis.org.uk/tfr2-non-hfe-type-3-genetic-haemochromatosis?fbclid=IwAR1RGTIdL5yTS0M69RFbNZFR_oQRQjNTb4gbfGu2m14Q0J9Qopt-b4yIKhg

https://www.haemochromatosis.org.uk/ferroportin-disease-non-hfe-type-4-genetic-haemochromatosis?fbclid=IwAR1-d5DS964rapby3_sTImire3De9vJ0XpmqQOJdZWEK5HWft5PZ4riMGqA

You may have the rarer ferroportin disease which gives high ferritin but low TSat! So your GP isn't as well-informed as he thinks!

"Some individuals with ferroportin disease develop a mild form of the disorder. These individuals have elevated levels of ferritin in the blood plasma (hyperferritinemia) and low level of saturated transferrin (the protein that carries iron in the blood). As affected individuals age, mild liver damage (hepatic fibrosis) may occur."

I think you just have to keep pushing for answers!

Thanks Crunchy Carrot.

Thank you for those links 👍

Yes I wish I'd have mentioned ferroportin to GP in phone this morning...

He has sent letter to Haemotology to ask if it's worth me having an appt and am I worth a ferriscan?!! So not actually referring me! It's up to the dept! Great.

(A private ferroportin test with HH UK is well over a grand so not sure husband would go with that... BUT I'm not giving up on this!)

IronLoader - think I might give the HH UK people a call tomorrow for little chat n advice.

Thank you so much for helping 👍🍰

I just thought of your post again and wanted to check in and ask if you've had your face-to-face GP appointment yet?

I'd be concerned that any yellowing of the skin ought to be investigated promptly, really, and an accurate diagnosis made- whether that's hereditary haemochromatosis or something else. It's also a possibility that the skin yellowing has another cause and the H63D is a red herring here. I wouldn't want to speculate, I just think there should be a proper attention and diagnosis from a doctor.

IronLoader - I have an appointment to actually SHOW this 'sun-tan' colouring to a GP on the 18th March which is in a couple of weeks... will also show them the mystery rash/under-skin bleeding (?) around my ankles. I'm also off for an ECG this coming Wednesday.
I've no idea what's going on! Hoping for some answers soon but with our wonderful NHS in a pretty bad way after 14 years of Tories - who can say!!
Thanks for thinking of me, I do really appreciate that!

Do you know, IronLoader, if high ferritin for such a long time is damaging..? It was almost 500 about 12 years ago and has been steadily rising ever since. I wonder why it's been ignored. Am I making a fuss over nothing..?

Hi hope you don't mind me gatecrashing, my husbands sister has haemochromatosis was dx last month and phoned husband to get himself checked.
He had his bloods done on Thursday of last week and had a phone call to say the doctor needs to speak to him tomorrow.
On his NHS app it says his serum Ferritin was 957ug/L .
Is this indicating Haemochromatosis? What would they do now?.

Hello Iamme, you're not crashing! Welcome to the chat!
Wow, your husband's SF is as high as mine!!
I suppose that if Haemochromatosis is indicated like this, then the first thing to get done is a genetic test. The NHS would refer the patient to either Haemotology or Gastroenterology to investigate and decide whether to do the test. However, it seems to me that the test only looks for the two most common types of HH. So if one were to have one of the other types, it would not be possible to diagnose without further tests...
(I suspect I may have one of the more unusual types)
A speedier way to go would be to get in touch with "Hereditary Haemochromatosis UK" (they're easily accessible online) and pay for private test - £120.
That's presuming you're in the UK!!
Hope that'll help a bit.
Best wishes, Mel 🍰🌻

Sorry, Iamme, I forgot to add, has your hubby had his Transferrin Saturation measured..? If it is above 50% or 55% that may indicate Haemochromatosis...
Google the HHUK site that I mentioned before - you can phone or e-mail them and they are super helpful and very friendly.
Oh and the test would be sent by post and hubby would do it at home (easy) and send it off in post and the results sent to him and GP in only (about) two weeks.
Mel 🍰🌻

I don't know about the transferring saturation, I think with his sister dx of hemochromatosis and the high ferritin he is worried.
But even more worried that its something else.

Iamme - If hubby's sister has HH and hubby is a Full sibling, then there is I think, a 25% chance that he will have HH too... But he could also be 'just' a carrier.
Alternatively, SF levels DO increase in response to infections and other illnesses AND also if there is any inflammation - which could possibly be an auto-immune thing...
If GP suspects HH then they will probably test "Transferrin Saturation" (T-Sat).
That's about the extent of my knowledge. The HH UK people are just a call away!!
All the Best, Mel 🍰🌻

Well GP phoned and said that as none of the other tests was abnormal (even though they did not test for T-sat unless its can be called something else) then they think it's not HH.
They are going to do another blood test in 4 weeks.

Do you know, IronLoader, if high ferritin for such a long time is damaging..?

Ultimately it is very damaging to organs such as the heart, pancreas, joints and liver to have overloading of iron. Ultimately (and obviously a long way down the track) it can kill you. There was a recent Scottish death that has sparked a campaign to get everyone in Scotland tested for haemochromatosis.

https://www.bbc.co.uk/news/uk-scotland-north-east-orkney-shetland-68155683

Thank you Crunchy - yes poor lady - I thought high ferritin is damaging BUT two GPs insist I'm not actually "Loading" because T-Sat was merely 38%. I told them both I've gone Golden (suntanned colour) in certain areas but one says "oh maybe you have lovely Olive skin" and the other has not seen me yet... However I do now have appt to show my rash (and will show the bronzing too) at the end of March. AND I have an ECG this afternoon.

I'm 54 so this has gone on a while....