Hi All
I have now have very low ferritin its 13 and I have haemochromatosis but not had a venesection since August 2022. My ferritin has been low for some time.
My consultant wrote to say its very low because of my previous venesection program.
Has any one had this happen to them please ?
Hi Gladys,Yes, the same with me. My ferritin is low, I have not had venesection since 2020. By have only been getting telephone appointments since then, due to covid, with blood being checked annually by GP. Surgery. About 2years+ ago the consultant from hospital phoned, suggesting that because it was low I should have an endoscopy to rule out bleeding in bowel, and possible bowel cancer, in spite of having no symptoms of anything like that , which I declined. I have never had another appointment for haematology since, so I think they have now written me off!!
I have since had two negative bowel screening samples from the routine Bowel a screening program.
Hi Sonsylass
Many thanks for your interesting reply. I think that haematology may not contact me again. I have been waiting for two endoscopies top and bottom for about 6 months as I am experiencing constipation and acid reflux . I was due to go to a local clinic but they declined as I have had a pacemaker fitted a year ago so advised me to go to a main hospital and on the waiting list. Thanks again for your kind reply
Hemochromatosis runs in my family, and I have three or four phlebotomies a year. My mother, now 76, hasn't needed a phlebotomies in over four years. Her feritin level is slightly above 150, and the doctor is considering what to do, but it's no longer increasing at the same rate as it did 25 years ago when she was diagnosed.
High ferritin 
Asymptomatic high ferritin
Diagnosed as Compound Haemochromatosis
No diagnosis, unsure what to think while waiting
high ferritin - advice on further testing 