Experiences with

Haemochromatosis

Haemochromatosis..Nash liver cirrhosis. all 3 to get is very unlikely. Is any one out their has 3 or more diseases.

I’ve just been diagnosed with Haemochromatosis. A condition where there is iron overload. I need venesection to remove the iron. Has anyone else experienced this?

tests being done for haemochromatosis but more than likely alcohol related. cutting alcohol will be hard and I’m getting help for it. it’s really worrying me as doctor is amazed I’m not yellow. Did anyone manage to bring down levels quickly and if so, any tips?

Never got that referral but much later Doc said they heard from haematology and there was no sign of Haemochromatosis so should be fine. I wasn’t totally convinced as my GP is very ‘blase’ with little detail and if you get 5 mins you’ve done very well.

Pearl is an acronym of - Prospective Cohort for Early Detection of Liver Cancer The Pearl study aims to recruit 3000 people with liver cirrhosis caused by one of the underlying conditions of HCV, HBV, alcohol-related, NAFLD and haemochromatosis, who have never been diagnosed with HCC.

Do you have and want to help make the way it is diagnosed and treated in the UK better for patients?

I have fatty liver cirrhosis .i was diagnosed 3 years ago .i have haemochromatosis been having venesection. i been suffering with severe depression and anxiety.Panic attacks while trying to get to sleep and during asleep. im really suffering from lack off salt and sugar.

I had a GP appointment today, booked weeks ago to discuss my ferritin sats ( next step is testing for haemochromatosis) but in the course of the conversation, I asked about her take on the Gastroenterologist saying she doesn't think I have PA, and she replied that she isn't sure what to make of it but

They have advised that you are at risk of developing Haemochromatosis, and to check your bloods every 6 months. The level at which action is required, is a "transferrin saturation index" of greater than 60%. Normal range is 15 to 45%. Your latest level is 48%, so well short of concern.

just wondering if any cirrhosis patients suffered from low sodium and high iron levels. Are these levels really bad news for mortality.

I have always had very low blood pressure to the point of having to add extra salt to my diet. I have been taking 50mg of iron bigylcinate every night which does help me sleep and diminish my RLS. But now my blood pressure as risen to the 130-140/70s and I am wondering if I am getting too much iron

https://acrobat.adobe.com/id/urn:aaid:sc:EU:8eea8238-2116-4138-837d-0f4b35b5ff89 A comprehensive analysis of previous intravenous Iron studies confirms that they improve IRLSS scores but not necessarily quality of life. We know that iron Therapy, preferably a quick iron infusion, should be first line

Hi I've joined to maybe get some advice as I don't feel well. I am seeing my doctor as I'm feeling fatigued, generally weak and my coordination seems off. When I give blood my Haemoglobin is always border line, I can only just get through to donate. They say my iron is low and to see my doctor.

A few recent posts regarding more complex and deep iron-related issues and I found these two substantial and complex papers. For those who need more than the simplest levels of advice and information, they might be worth at least a skim read. I do not pretend for one moment to have understood the

Iron Saturation (January 2025) Serum Iron level 23.0 umol/L (9-30.4) Unbound iron binding 44.4 umol/L Serum unsaturated iron binding 67.4umol/L Serum saturated iron binding 34% (Laboratory note: ‘iron saturation= borderline.communicate with patient) Serum ferritin 38.6 ug/L

My husband's results came in yesterday: Iron Bind Cap (TIBC) 313 ug/dL, UIBC 173 ug/dL, Iron 140 ug/dL, Iron Saturation 45%, TSH 1.810 uIU/mL, Ferritin 172 ng/mL. Look to be satisfactory? Thanks so very much for the insights and guidance this group provides for us, every day.

Hi guys Is anyone in the know on Ibogaine treatment for parkinsons watched a joe rogan podcast yesterday and the guests where claiming of reversing and healing parkinsons. Also does anyone know of any good treatment centres for Ibogaine ? Around the 30 minute mark they get onto parkinsons related

just seen results of my iron studies, not good to say the least! My GP held her hands up and admitted she knew next to nothing about RLS and was receptive to the literature I printed off for her. She is not happy to start a tapering regime until she gets advice from a neurologist and has referred me

Dear forum members, FallingInReverse radd I am trying to work out the best way to maintain my ferritin level. I took lactoferrin for 3 months (July, August, September: see previous post) and I have just received my results from x2 Three Arrows weekly(Oct, Nov, Dec), I’d be very grateful for your input

you said to post our iron levels . . . My Ferritin is 33.9. Iron is 83 . . . TIBC is 320 and Iron Saturation is 26, What should I do?