Haemochromatosis Society UK

Asymptomatic high ferritin

Hi- I'm hoping someone here can help or point me in the right direction.

I'm 69 yr old male. I had a bad accident in 2013 involving six months in hospital and got a new spine out of it all. After coming off the opioids , I experienced severe restless legs. While researching this affliction , I got my doctor to test my ferritin level. It was over 1000!

After doing the rounds of blood and liver specialists , and all the tests , I know I'm not genetically hemocromatic ( even though Celtic background) have healthy liver , abdomen , heart etc. I'm a medical mystery.

Ferritn levels were-- 2010 -- 136

2013 (ICU) 3000+ (Transfusions)

2015/16 between 1100 and 1200 measured every few months.

Experts are stumped.

I'm wondering if osteoarthritis in lower back is enough to cause this? *Inflamation) I'm quite fit and healthy otherwise.

Phlebotomy is the next proposed action.

Question-- if I'm otherwise perfectly healthy , should I be worried at all with the high ferritin? --(concerns about cancer , diabetes etc,etc?)

Or should I try the phlebotomy and see how it goes?

Am I missing anything?

I appreciate your attention and welcome any comments or tips or pointers.

Thanks. David.

5 Replies

You can have hemochromotosis without it being hereditary do the phlebotomy to get it lowered I do every few weeks...

Ask your doctor if you can start soon or ask why he is waiting to start you maybe he is going to check something else? Don't wait too long...

I started to feel better after my numbers came down, good luck to you let us know how you are doing....


Thanks- that's the problem - I don't feel bad at all. Training for a mini adventure race in two weeks time! !

But I think the phlebotomy is the next course of action. Just getting one more blood test to check the trend.

Thanks for rhe advice. I'll let ye all know how it goes.

1 like

Good luck on the race make sure you are healthy first 🙂

1 like

Hi David sorry to hear of all you have been through. With those levels I would suspect a false negative like I originally had. After all we are dealing with fallible humans even in the medical system.

Knowing whether it's HH or not is probably of more importance for your relies so they can get tested. For you the treatment will probably be the same either way. I'm not a doctor but if it was me I would get the phlebotomys with such high ferritin. It could be heading off future trouble or the ferritin may be depositing in organs or glands or even the brain in areas they can't test for. Good luck.

1 like

Thanks- good advice.


You may also like...