Managing my Haemochromatosis

Ashleigh tells us how she manages her haemochromatosis.

[@Thebusysuperhuman]

Thank you very interesting

[@axeouse]

hello! welcome to the club, I was diagnosed over a decade ago, in my 20s as well, I know your pain.

[@LyricBeastOrphanage-l3w]

I don't get it they told me i couldnt donate blood because of hemochromatosis.

[@il3mendo]

May I ask you your levels? Mine are 190 iron serum, 390 Ferritin, 210 Transferrin. I am going to have the Hfe gene test soon.

[@abdullahmohan9107]

Good motivation.

[@craigfisher1062]

What range do you hold your ferretin levels at

[@mor9n243]

I always felt better giving blood that was the first sign i had higher iron levels

[@Renofirefly30]

What was your ferritin level? I have the genetic variants and my ferritin is greater than 2000. 2000 was the max reading for the test. My iron is 208. My symptoms have been severe for about 10 years with mild symptoms before that. I'm almost 42. I figured out what i had after requesting an iron panel after 23and me DNA test showed i had the generic variants and i had all the symptoms.

[@danvining2186]

what level ferritin to you try and stay below and what's your TSAT%? Ideally if tsat% is above say 33% it's good to bleed when ferritin is 50 or above but if tsat% is below 33% you can let ferritin get up to around 80. Oxidative stress is said to begin when ferritin rises above 100 and the sweet spot of ferritin is around 60-80 providing your tsat% is healthy, under 33%.

[@PollyMcMan]

Can't remember tsat, but I've been un maintenance for 5 years or so, I have to aim to keep it at 50. It crept up to 80 because I forgot to book a blood letting. 2 years ago it went as low as 20 and I felt run down and kept getting cold and flu 🤧 that was having it every three months. Now I need about 3 a year.