Experiences with

Haemochromatosis

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

The British Liver Trust are looking for people living with haemochromatosis to help us update our patient information. We are especially interested in including people recently diagnosed with the condition.

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.

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.

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

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

Hi Everyone Can anyone help me with my Iron blood tests results please. I am taking 200mg Ferrous Sulphate once a week as prescribed by my Doctor. I was originally on it daily but my dose has been gradually reduced over the course of the last year or so. I haven’t spoken to the Doctor about my results

Hi. Following my last post (in December) I just wanted to let people know that I seem to have reached a point where the iron I have been taking for a year now is having effect on my RLS!!. My serum ferritin test in Dec had improved from 22 (in March 2024) to 78 but at that point I hadn't noticed any

Hi all, I have recently had blood tests done in Ireland and I'm not sure how to interpret the results, input would be greatly appreciated.Iron: 19.7 Transferrin: 2.1 TF Saturation: 37.5 Ferritin: 479 Thanks

Hi everyone, I’m reaching out because I need some guidance regarding my health. My dad passed away last November due to hemochromatosis, and his sister has the condition as well. I was tested for it, but my doctors have assured me that I don’t have it and seem to dismiss my blood test results.

Hi, My latest blood tests show iron near the top of the range, and tsat% over-range. I've stopped iron and vitamin C supplements for fear I poison myself ! I'd only been supplementing iron 5 weeks since end of Dec 24, 20mg of iron bisglycinate every 2-3 days, sometimes not at all. I was trying to see

This forum is, obviously, primarily for thyroid issues. But, as most know, the parathyroid glands are physically adjacent to thyroid tissue. And it is well-known that some thyroid treatments (thyroidectomy and radio-active iodine for two) can result in damage to the parathyroids. We usually have four

I have had Lupus SLE since 2002 and have now been diagnosed with Haemachromatosis in November 2024.I am to have venesection to reduce my iron overload. I would love to hear from anyone else who has both these conditions or just the Haemachromatosis and what has been their experience and treatments.

asked my doctor last week to order a full panel iron test. Lab order was written as IRON(F). 3 hours later get a message that preliminary result is iron high 172 gu/dl. Doctor will discuss results later. Nothing on Ferritin. Have an appointment with Neurologist next month. First time seeing a specialist

My zinc is well below the lowest measure. My hair is falling out/thinning. My doc thinks I'm suffering from chronic fatigue syndrome......My zinc test result is marked 'NORMAL' - no concern whatever from medical profession. What is going on??? I clearly don't absorb zinc through my stomach. Why is

Iron Bind.Cap.(TIBC) 328 range 250-450 / ug/dL Final 01 UIBC 233 range 111-343 / ug/dL Final 01 Iron 95 range 38-169 / ug/dL Final 01 Iron Saturation 29 do I need to supplement?

I wanted to get insights 1. If bilirubin is present in urine causing it to be darker would it definitely be picked up in the blood test in that case. 2.do ultrasounds pick up fibrosis? 3. When I originally had my urine tested it was dark in the toilet so I panicked and called gp who advised to