Venesection and NAFLD and serum ferritin

[Iro1]

Hi

after recent blood tests which showed my red blood count well above normal my Urologist has proposed venesection. The reason the Urologist believes my red blood count is so high is because I am on testosterone replacement therapy. I have diagnosed NAFLD my LFTs platelets all normal. My serum ferritin has been high for a number of years and was the reason my GP sent me for liver investigations. Just to complicate things I carry from one parent the hemochromatosis gene.

When I first became aware of my high ferrittin I went to give blood. Unfortunately I was turned away because I was under treatment by my GP. Now ironically I am going to get that treatment.

I will keep eveyone in touch with my progress. Venesection has apparently been used as a treatment for NAFLD. I am not a doctor and I do not expect anyone to make a judgement on here but it appears to me that central to my condition is excess iron. High ferritin increases haemoglobin, it also damages the liver but also is caused by a damaged liver, it reduces testosterone (which may explain why I started having testosterone in the first place!)

The liver consultant spotted my hemochromatosis gene but believed that I needed two copies for it to cause liver damage. There appears to actually be some debate about this with some believing one might be enough.

In my dream scenario venisection will turn out to be the magic bullet treatment. By impacting iron it will impact my other conditions.

Are the British Liver Trust aware of any trials of venesection to treat NAFLD and liver disease in general?

I have a reputation for being Dr Google, it certainly has got me into trouble before, but the sharing of information can sometimes help. I am genuinely excited to embark on this treatment. Really excellent work by my Urologist who has now involved the haemotology department.

I was sent away by my liver consultant after my fibroscan showed 9.8 down from 10.8 so they have not been involved.

Please let me know if you have had similar symptoms/experiences.

If venesection is actually effective then given the infrastructure for blood donation is so extensive in the uk it will turn out to be one of the most cost effective treatments ever!



[Airgirl]

Hi I have NALD and am also on testosterone due to symptoms of the menopause.

Last November my ferritin was 450, I was referred to a consultant who tested for haemochromatosis , (negative)

He said retest in 6 months, if ferritin is sill high I should have a liver scan, I had the results from my recent blood tests and the ferritin had dropped to 250, all LFTs normal in the last 6 months I have increased my fitness regime, walking and exercise bike, reduced red meat intake and have been taking a tumeric supplement which I read was good for iron overload.

I have been discharged from the consultant who said the lifestyle change had made the difference.

Hope this helps

Regards.

[Iro1 in reply to Airgirl]

great news

[Harperlee01]

I have NAFLD one gene for hemochromatosis and Porphyria ,I also had extremely high ferritin levels which all combined mean I now have cirrhosis.

I had an intensive course of venesection a few years ago and its impact was amazing.

Along with adjusting my diet my ferritin levels are now under control.

Hope this helps.

[isi123]

Hello,

I had NAFLD and one gene for hemochromatosis , i had 1200 ferritin y some liver damage. My whole family has only one gene and hemochromatosis, a fight with inexperienced doctors, which costs us our health. There are other mutations related to hemochromatosis that are not studied, not only homozygotes or double heterozygotes have hemochromatosis

[Iro1 in reply to isi123]

Hithank you for your reply my Ferritin is 480 has been as high as 528. Sorry to hear about your experience are you on venesection at the moment if you do not mind me asking?

IRO

[isi123 in reply to Iro1]

Your ferritin levels are not very high. I donate blood every 3 or 4 months, to keep my ferritin and transferrin saturation below 50. I tolerate phlebotomy well and feel fine.

The hematologist has to study your situation, on some occasions being a carrier of hemochromatosis + fatty liver can cause ferritin levels to increase without actually having developed the disease of hemochromatosis in its fullness. In men it usually shows up at younger ages and with more virulence, (my case 1200 with 38 years and 50% STA).

I also have fatty liver. I have improved with the monitoring of heptologist, hematologist, and more important nutritionist and exercise. I am developing some insulin resistance, due to genetic issues. But my CAP at my last fibroscan was 218 (from 229 I had already lost 16kg, I don't know what my number was before), and fibrosis 5.8 kpa (from 6.8 kpa).

Even my liver profile has also improved in one year (weight 103kg to 77 kg):

ast : 17 (from 29)

alt : 19 (from 45)

ggt : 25 (from 74)

Physically I feel better. My grandmother developed cirrhosis from hemochromatosis and turned 80 years old.

[Iro1 in reply to isi123]

alt 18

[BritishLiverTrust1 Partner British Liver Trust]

Hi lro1, in addition to the replies you've already had, we would add that we are not aware of any trials around venesection to treat NAFLD and liver disease in general at this time.

Best wishes,

British Liver Trust