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..?

Iamme - with a SF that high, I would've thought GP maybe ought to send hubby for Liver scan or an MRI but the NHS is in a bad way as we all know so I think GPs aren't able to do as much as they perhaps should. (Politics is to to blame.)
Another test in a month is Good though.
Does hubby's GP know his sister's diagnosis..??

Melcakey the GP does know about his sisters dx of hemochromatosis not that they are bothered it seems.
And I've looked all though his blood tests and can not find T-sat.
It sound like you have been on a journey as well, and yes the NHS is on its knees.
The problem is if they don't deal with things now it's going to cost a lot more to treat people in the future.

one says "oh maybe you have lovely Olive skin"

Speechless. 🙄

Iamme - This GP's response makes me think you guys should get a second opinion from a different GP! HH is serious!! Hubby's GP MUST take this seriously! Insist!! If not then see another Doc.
Please DO phone HH UK for advice! (I bet they will suggest a T-Sat test!)
Wishing you n hubby all the best on this
Mel 🍰🌻

Crunchy - yeh, I know! Her office IS a bit dingy so maybe she was not truly appreciating it but for goodness' sake! 🤪

When I have another appt on 18th March h to show a different GP the weird ankles issue, I will show him and I shall pull down my shirt n pull up sleeves so GP can get a good view of the contrast in colour between face/neck/chest and arms versus the rest of me which is lily white!! Honestly it's glaringly obvious in my bathroom mirror!

Olive skin my ar*e!!! 😆

I just fount the T-sat but it said serum iron sample too lipaemic for analysis, anyone know what that means?

Google does:

Lipemia is defined as visible turbidity in serum or plasma samples due to the presence of lipoprotein particles, especially chylomicrons. The most common cause of turbidity is a high concentration of triglycerides.

Too many fats there for the sample to be analysed.

So useless, I did have a little read as well and it did say that really this test should be done in the morning after fasting.
His was done at 3pm obviously after eating, will hopefully get it right when he goes for his next test.
Cheers Chrunchycarrot.

Yes that would explain it! Let us know how he gets on.

Iamme and Crunch carrot - and this is why we, with iron issues need to see someone more specialised! A GP is exactly what it says on the tin, GENERAL!! Our GPs know a little about LOTS of things but as such, lack in-depth knowledge on many.

Mel 🍰🌻

Yes absolutely. Jack of all trades and master of none!

Got this today in my inbox, from Dr Chris Masterjohn (he's a functional practitioner in the US, has haemochromatosis himself. He's quite the wizard with biochemistry) and it is quite worrying:

https://chrismasterjohnphd.substack.com/p/iron-overload-forget-what-you-thought?utm_source=post-email-title&publication_id=752142&post_id=142449399&utm_campaign=email-post-title&isFreemail=true&r=2agfec&triedRedirect=true&utm_medium=email

Just had an appt with GP who said the bleeding under skin on ankles is "just broken capillaries" and is nothing to worry about AND that having a SF of almost 1000 is also Nothing to worry about. My iron is fine so "you are not loading iron". I told him it's been high for more than 12 years and he said lots of things can cause that and it is not a problem and they'll test it again in a year. The Bronzing is just "sun exposure" which is normal. Iron overload in skin would be "much browner and with blotches"! MS can increase SF. That was it.
Will wait to see if Haemotology will see me but if not then that's that. Nowhere else to go with it.

Can that be right .??

@MelCakey missed your latest post! Wow so 1000 ferritin is nothing to worry about? Can you see another GP, because that one seems dangerously negligent. Not to frighten you too much but you'll end up with liver/heart damage if you keep loading iron.

My husband had his redone yesterday and his results have come back this morning at 1117
So let's see what the doctor says.
@MelCakey I would see another GP if you don't get anywhere.