ncbi.nlm.nih.gov/pmc/articl...
Hope everyone is as well as they can be this grey miserable day? Good information on this link about the common myths of haemochromatosis for anyone interested or affected, I found it reassurring and informative anyway so thought I'd share. I'm still waiting for my next appointment but trying to learn as much as I can anyway as even if I test negative, knowledge is power so they say (I also just love reading.... anything and everything🙄). Xxx
stacie, this was a good read, my father in law just donated blood due to having high iron, he doesn't have the gene so he opt to give donate blood. His ferritin (I can't remember what the level showed)was about 20 points from being over the normal..so it was at the very top. His doctor didn't say anything because it fit in the normal range. His neighbor is a nurse and told him about iron levels being that high is bad for the liver. He immediately gave blood and is due to give again in May which will put him in an optimal range. I have also learned from the neighbor(nurse) that many people do well without complication when they watch their iron levels. I don't know your age but she did say women that are still menstruating does really well.Good luck!
Hi Sophia, glad you enjoyed the article, it's surprising how prevalent it is! I'm glad your father in law is managing to lower his levels, high levels aren't great. Thanks for the info but I'm unable to donate blood as I have another condition called porphyria, so my blood can't be used. My ferritin is pretty high, will take quite a few venesections to get it down but also my transferrin saturation index is high. This coupled with the porphyria which is also linked to haemochromatosis means I need the genetic test next. I'm 33 but I don't menstruate and haven't for a few years as i have a mirena coil contraceptive in. I think this could have caused me to start loading iron and in turn activated the porphyria, the treatment for both is venesection. I'm sure I'll be fine once my treatment starts 😊. All the best to you and your father in law. Xxxx
Hi Stacie, I was at the doctor's office today and a lady in the office had her first round of venesection. She was talking to my father-in-law and she said, it was nothing..she said it is just like giving blood. Her ferritin levels were 121 which she said range was up to 150//and she said her sat was at 35 and went up to 55...I don't know if this is high but just to let you know she said they took 1 pint of blood...she was in the office to see how much her ferritin had gone down. The doctor said it had really gone down a lot more than 30 points which is the usual...it went don almost 55 points. She did say lots of people have that kind of success. good luck
Hi Sophia, yes it's the same procedure as giving blood only it gets thrown away, which seems a shame. I presume you are in the US? In the UK from what I've been reading on a forum with people going through it, they won't even begin venesection until your ferritin is 300-400 with a transferrin saturation increase over here, I think the Drs in the US are much more 'on it' than ours! 😁 thankyou again for the info, its good to know of good outcomes. Xxx
Never Ending Journey!
Husband very confused
Saw liver doctor today 
