liver issues and hemochromatosis

[Brentford1965]

Hi my first post on here not great at this format but would really appreciate any advice on my situation as doctors don't seem able to give much support beyond blood tests and scans every 6 months

so after 4 years of GP visits and various ailments symptoms and tests i was diagnosed with hemachromatosis July 2023 started on blood venesection twice a week ferritin was 2053

transferrin saturation was93% eventually it come down within range December 2023

i had a FibroScan score of 11 i then went on a healthy lifestyle relying on you tube and google for help as no advice was offered from the doctors i lost 35 kg in weight and didn't drink

17/5/2024 i had a second fibroscan 7.9 and cap score 283 i was pleased and relieved at the improvement so relaxed a little an occasional indulgence drink and food put on about 6 kg

i had another FibroScan 22/11/2024 my new score is 10.8 my cap score has gone down to 200

i have a lot of aches and pains in my belly, fatigue, breathless muscle weakness leg cramps,night sweats and out of range iron, 62 transferrin saturation is 100% GFR is 68 ml bilirubin 31

I don't know if its significant my cap score dropping into the ok area and my fibrosis going back up at the same time but the consultants have been vague and unavailable outside of my limited booked appointments and I've had to chase for scans at every stage i have been seen by haematologists not seen a hepatolagist yet

thanks for taking the time to read this any information that you reply is appreciated

[2022minks]

Well done with the weight loss that will really help but that old I'm doing well and you relax can quickly put your good work back again. Try and stick to this new healthy lifestyle, keep off alcohol, in time it could really improve things. Appointments generally are 6 monthly as they will monitor for any changes.

We only had Google to search that's where we found the liver trust and all of their literature is downloadable. Keep asking questions and some people on here are more knowledgeable in what scores relate to hope you can get some feed back x

[Brentford1965 in reply to 2022minks]

thanks for your reply

[Smegmer]

If you haven’t already, requesting an MRI for liver iron quantification might give a more accurate picture of iron-related liver damage than FibroScan alone.

You need to see a Hep Dr asap.

[Brentford1965 in reply to Smegmer]

Hi i did get tested with ultrasound and MRI at the point i was diagnosed with hemochromatosis and i had liver iron concentration 6.1mg Nov 2023

and a second ferriscan may 2024. 1.3 mg after that i think they was happy that the venasections i had was bringing my iron overload under control

so i just think its about trying to reduce the scar tissue with a healthy lifestyle if its possible

i don't know why my cap score is going down and my fibrosis is going up or

how long the timescale is likely to be to recover or if i will ever be able to drink alcohol again or eat a cake ice cream etc

[Smegmer]

Fibroscan measures stiffness which is translated into a likely score for Fibrosis present. Considering what your Liver has been through, it might just be findng its feet. Liver can improve for ~5 years. Now that the cause is removed it should improve. Fibroscans can be taken with different scores depending on the operator. There also isnt Fibroscan range for your condition ?

[Liver135]

I have haemochromatosis too .this went on to be fatty liver and now cirrhosis. To day I go for a pet scan at the QE Birmingham because I have a Legion in my lung which they suspect cancer . Iv been coughing up blood.

So keep up with the diet is the most importance . You need a liver Dietician and not books on cirrhosis or dr google they contradict each other the .

[Brentford1965 in reply to Liver135]

thanks for your message I hope your

Scan brings better news it’s hard to be in this situation I wish you good luck

[isi123]

You need to lose weight and follow a healthy diet. You have fatty liver, and that significantly worsens our condition.

If possible, do some exercise within your capacity, even if it's just walking.

The FibroScan is a tool that depends on the operator and does not examine the entire liver, only a small portion. Additionally, fibrosis is not uniformly distributed in the liver.

Alcohol is strictly forbidden.

It's important to determine the degree of fibrosis you have. We need to be cautious about hepatocellular carcinoma, as our condition makes us very prone to it.

Regarding iron, many doctors follow the 50/50 rule: a ferritin limit of 50 and a transferrin saturation limit of 50.

PS: I also have hemochromatosis.

[Brentford1965 in reply to isi123]

thanks for the information much appreciated

xmas is hell on earth when your trying to be healthy don't want to be a party spoiler but so much temptation at this time of year glad its over back to normal now happy new year