hemochromatosis and cirrhosis

[Canuck1959]

…..initially a great struggle….lack of diagnosis, incorrect diagnosis, incomplete diagnosis…..wrong type of medication, multiple times as they did not work.

2015 - diagnosed with hemochromatosis and NAFLD. Treatment was phlebotomy until ferritin dropped from 1300 down to 50. Which took about 12 months. Monthly cbc blood work and additional phlebotomy as needed.

Numerous years of complaints about chronic pain….non opioid medications prescribed - didn’t work, Pain clinic - nerve therapy…- meh, also didn’t feel it worked.

Discovery of neck, lower back stenosis. Right shoulder needs replacing ( reverse style replacement)….

Continued chronic pain….

More medications that didn’t work….

Finally tramacet 37.5 mg seemed to work…with a now approved emergency supply of hydrocdone 1 mg x 40.

Still had pain issues , general feeling of being unwell, sleep pattern problems - major!….no energy…..

Doctor not really believing me.

Finally back to specialist —— my blood work looks good so he also is not sure what to do….

Send me for a FIBROSCAN.

Comes back with F4 fibrosis- cirrhosis.

Diagnosed in 2015 with NAFLD and not once did these medical professionals consider rechecking my liver ….until it is now too late to reverse….

As you can imagine I am not happy ….really upset and angry for the first couple of weeks…..

Now 100% take responsibility to ensure I am doing all that I can ( reading up, podcasts, medical reports) on my set of health issues.

Diet and exercise seem to be the treatment that helps manage my condition the most at this time.

That said there was no referral to dietitian or nutritionist even when I asked…..

While I can and am following a diet for Cirrhosis and Hemochromatosis, I also need to lose 10 to 15 % of my weight for maximum benefit and improvement.

Now I need the help as I am unable to determine where my body is in the ability for my liver to function properly if I am doing a caloric restriction or low carb, high protein diet.

In some cases I read that more liver damage can be done by choosing the wrong diet to follow.

[Hdon]

Sorry to hear of your troubles. I too have Haemochromatosis (GH), diagnosed in 1990 and keep well these days. One of the first things they should have checked in your case was your liver. Joint pain can definitely be linked to GH and, like you, I find exercise essential. People get a bit hung up on diet and GH, best advice here is eat the recommended NHS healthy diet. You can’t treat GH with diet but you can maintain a healthy lifestyle and avoid things that accelerate iron absorption. So in your case I would concentrate on the best diet for your cirrhosis. I am a volunteer with Haemochromatosis International, do you know there is a good Patient Organisation in Canada? I’ve tried to post a link but this site won’t let me. Just search for Haemochromatosis Canada, you should get good advice there.

[0range5520]

Hello,

I can understand why you feel frustrated. My cirrhosis could have been diagnosed earlier too and only became apparent when I asked to go on HRT and they looked at previous blood tests. I was totally unaware that my LFT were of any concern. They sent me for a Fibroscan and diagnosis made.

Anyway, a spoke to my Dr and said a wanted to speak to a Dietitian and I was very persistent. He knew I didn’t drink and my BMI was ok. I told him I really needed some hep, advice, anything to stop the condition progressing and he did do a referral. Fortunately I had a telephone appointment with the dietitian who gave me some really useful advice on what I should or shouldn’t be eating.

It might be worth asking again explaining that you really want to help yourself to get on top of things and need further advise.

I hope you manage to get the answers you need.

[Smegmer in reply to 0range5520]

I would be furious if there was a history of raised LFTs and they never investigated. 2 in a row raised is something to investigate. This is negligence. Do they know the cause of your Cirrhosis?