Haemochromatosis and my liver

[HydroBee]

Male, now 50. My story starts five years ago when I was renovating my house and tripped down a broken staircase and knocked myself unconscious. I went to A&E and after getting a head scan my GP had me get some blood tests for any nasty tell tale signs to do with concussion and bleed on the brain. Thankfully those results came back fine but there was a warning on my iron levels. This prompted a new set of blood tests one for autoimmune stuff the other was for Haemochromatosis, something I’d never heard of before. Upon the results of those tests I now had been diagnosed with Haemochromatosis. My ferritin iron was very high and told immediately to start venesection once a week. I did it at that rate for over 12 months and during that time I had a series of tests to see what effects this accumulation of iron had on the rest of my body. My symptoms were tiredness and joint pain/swelling in the hands I would drop plates and couldn’t grip and lift anything heavy. Not good news for an avid sailor. This was a scary time and the results of the liver biopsy was deeply upsetting. F3-f4 fibrosis borderline cirrhosis and we were having discussions about resection surgery. I read everything I could get my hands on about haemochromatosis and liver damage and bugged the liver specialist ALOT. discovering there’s no pharmaceutical cure for either I clung onto two pieces of information 1. The liver has been proved to repair itself 2. Remove the root cause of the disease and the liver stands a good chance of not getting any worse. From that moment in I did everything to make sure I had venesection every week, I sometimes snuck in two but that wasn’t such a good idea. I stopped drinking any alcohol and ate well so I could help replenish blood, I was prescribed high dosage B6 & B12. Giving up the drink wasn’t hard for me though I missed the social side to begin with but the effects of taking blood once a week takes it’s toll. Tiredness, bit dizzy from time to time, dry skin, thin nails, aching all over, but I was determined to get the iron out of my body as fast as possible. I logged the ferritin levels and after a while I could see a downward trend steep at first and then gradually shallowing. My ferritin level went from 5000 at diagnosis to 50 over the course of nearly two years. That was quite a journey but whilst I was happy to be able to predict my ferritin levels over that time, my liver was the other big concern. In year one after the biopsy I was then scheduled to have ultrasound on the liver every six months where they were looking for several things including blood circulation issues. The fuzzy black & white ultrasound didn’t give me any metrics but I had heard of a Fibroscan which outputs NUMBERS -which I love and which could give me hard and fast feedback of wether or not things were getting worse or better. Once I knew those and knew what was considered ’good’ it was now my mission to work on those numbers. My plan was based off the recommendations from my GP and liver specialist whom collectively could only offer two pieces of advice -lose 10% body weight and pack up drinking, done! So four years later I go in for my second fibroscan. Iron levels kept between 50-150 now, donating blood once every three months and the odd venesection if ferritin wanders north a bit. The technicians doing the scan were pleased, they showed me the results and I had dropped from 16.8kpa to 6.7kpa (stiffness) this was a liver under stress now resembling something close to normality. I broke down in tears I was stunned. I had to double check and they reassured me that this was very good.

I cannot tell you how grateful I am to the NHS through all this, going to hospital every week you see the hard work the staff there do and how good they are at it. when I went back to the Haemotology day unit to drop off a thank gift I blubbed again!

It’s not over, but the outlook is very different and I am feeling better than I have for a long time.

I have learnt that these things take time and you need a strong motivator (in my case potential liver transplant & watch my kids grow up) to persevere and see it through.

During that time I read many stories on this forum and felt deeply sorry for the tough journeys many people are on but also inspired by people’s resilience and humour. I’m trying to give something back. This is intended to give people hope as things can and do improve, just hang in there.

[Readlots]

What a fantastic and inspirational story. I’m so glad you’ve been able to turn things around with the support of doctors and nurses.

[redpoint72]

Well done fella....just goes to show what can be done with sheer determination!!!. And our so hardworking nhs staff,they really are so good.

My best. Chris

[utep99]

I have not had a transplant yet but due to testing No smoking this will kill any chance you have at a transplant and same for alcohol. Keep sugars low!