Too much Iron

[Billyboy2216]

Does anyone else suffer with too much iron in their blood my ferritin levels are really high at 880 normal is 250.

[Dizzytwo Moderator]

Good morning, I have a friend who suffers with this problem. He as had to have knee surgery put on hold untill they reduce his iron levels.

He keeps having to have blood removed. From what I understand it is an health issue that is inherited.

I hope you get your iron levels under control soon.

Momo

[Billyboy2216 in reply to Dizzytwo]

Thanku and yes they have mentionned this to me had 3rd lot of bloods yesterday and will know by the end of the week x

[Mark1973 in reply to Billyboy2216]

hi

This is a condition called hemochromatosis, it is an inherited condition we’re your body doesn’t break down enough iron and it is absorbed into your body. Venesection (blood letting)every so often is the only treatment as it gets rid of the excess iron.

Good luck

[Billyboy2216 in reply to Mark1973]

Thanku I've heard it's just like giving blood x

[Billyboy2216 in reply to Mark1973]

Thank you 🙂

[Mad4it1966]

My husband was diagnosed a number of years ago with iron overload or Haemachromatosis. Please get it checked out further. It is known as the silent killer. He went had to have venisection regularly, over the years his levels returned to normal. If you have children, they may well need checking too.

[Billyboy2216 in reply to Mad4it1966]

Thank you I have heard this is quite serious but hadn't heard it called the silent killer.......that's a tad?worrying tbh, how is your husband now x

[Mad4it1966 in reply to Billyboy2216]

It is called the silent killer because symptoms can go under noticed. It attacks the liver, kidneys and pancreas I think. He is great now... venesection sorted him over time. Our children have all been tested and bizarrely all three have three different formats... two of them are twins and are totally different results. Thanks for asking after him.

[jhorsf]

Get well soon

[keokar]

Hi Billy boy, I have fibromyalgia and Haemotomocrosis. I was diagnosed in 2019 with high iron levels, like yours 800. I had a DNA test for it, which takes a month and found out I had it, from my parents. The only way to get rid of the iron is to have it taken out with blood let's, they then get levels down to around 30 and have regular tests 3 monthly. High iron can make you feel tired, you can get joint pain as well, mixed with fibro it's like having double trouble. Hope you get it sorted, and brothers or sisters need to get checked, also children, my son has it as does my sister. It only effects you when your older 40s to 50s. Take care sorry about long reply. Karen.

[Billyboy2216 in reply to keokar]

Thank you so so much and I really appreciate the reply, I feel exhausted all the time tbh, but this is on a new level, I also have Hashimotos and Type2 .

I sleep on my days off till at least lunchtime, have no energy levels to do even the basic of things, I have my first Rheumatology Appnt tomorrow and anxious about that also...

Just so fed up I feel its constant 2 forward 4 back In life xxx

[Jojo5860 in reply to keokar]

Hi Keokar I too have fibro and now been told my iron levels are too high. It’s a worry and as you say the pain I feel has increased a great deal. Have you changed your diet at all?

[keokar in reply to Jojo5860]

Hi JoJo, no not much, just have to be careful if some foods like cereals with added iron, and not too much red meat, but theres just small amounts in them. I had frequent blood taken out to get down to managed levels, now have every three months. But you know when levels play up, in leg pain. It's like arthritis in joints, it effect s all joints, was told could have more trouble with that to come. Take care x

[jkdood]

Maybe a new thread but seems some readers here might be on par. My ? is has anyone experienced or knows what a simple liver MRI with contrast exactly tells abt iron overload. I read it is very complex and radiologist may miss it, or need to be looking for it. I have seen several docs abt high liver enzymes and high ferritin and FATTY/NAFLD (had FibroScan=low fibrosis mild FATTY.) I have 1st apptmnt with hepatologist late June 2023,but have seen other docs. The hematolgist and others suspect iron overload despite normal iron saturation because of (my) fatigue, erythrocytosis(hemoglobin) and high ferritin (over 800 on 4 times). I tested negative(DNA) for hemachromatosis. The cardiologists did a heart MRI (no iron deposits) and my GP just scripted a LIVER MRI. I JUST read the radiologist report (best i can do plus Google, till June 19th) and it said moderate-maybe-acute-NASH-19% fatty fraction, but didnt mention iron at all. I then noticed script said "reason for MRI = elevated liver enzymes" thats all. Wish it said also: high ferritin and suspected iron overload (hematologist had suggested Liver MRI to check for that.) My question really is: as i seek to learn more b4 June 19th, can i assume if there were iron overload(deposits) the radiologist would say so? (not like i can call and ask him if the REASON_FOR_MRI omitted that would he also not look for it, sigh.)

[jkdood in reply to jkdood]

sorry, im new and layout confused me. i thought i was in NASH subgroup. sorry if not right place for this reply above.

[Jojo5860]

hi I have just been told mine is high I have an appointment with the GP to discuss it today