I have h63d homozygous haemochromatosis with raised ferritin and santuration levels i have had liver function tests and an ultrasound of liver spleen etc but all appear normal , i saw a heptologist yesterday who had now booked me in for a liver biopsy to confirm the amount of iron in my liver so he can make a case for me to have vivisection my levels are below the 1000 the nhs use as a guideline .
Has anyone had a liver biopsy how was it and wads it useful in initiating treatment please
In general liver biopsies are not advised because of the dangers.If you don't get an expert reply here, I would definitely ask at the Iron Disorders Institute website.
It is a generalised email set up, so you just ask your question and someone will answer. There are some very knowledgeable people there.
I know there are special scans available for looking at iron in the liver.
Good luck.
thank you have spoken again to the consultant who is happy i go for a private open sided scan and send him report
turns out can’t have open scan of the liver 😢
Ferriscan?
it’s still done in an mri machine
alfiedoodle,
We all have raised ferritin and T/S as it goes with the territory until we reach maintenance ('normalised' iron levels).
I didn't think liver biopsies were carried out now a days as the risk doesn't quantify the findings which can be gained by other means. You say you have had an ultra sound of your spleen but what about your liver?
If your liver function lab tests are normal why is your specialist wanting further liver investigation? I would assume many of us have suffered a little undiscovered organ damage on some level that doesn't effect our chance of rectifying with venesection. If your bloods are showing high levels of ferritin and T/S is elevated you need venesection to eliminate further risk of liver damage.
I would question your specialists intentions and ask what he hopes to discover and what course of action he will be taking with the results as he doesn't sound as if he knows what he is doing. I agree with Madlegs1 in asking the Iron Disorders Institute for further opinion.
hi yes scanned liver as well as my levels have come and are not within new guide lines for vivisection he needs to make a case to haematology so they will do this says as i can’t have mri because of severe claustrophobia only other way liver biopsy
alfiedoodle,
If your scanned liver looked ok then why the biopsy? I haven’t heard of new guidelines. If your iron levels are elevated and liver damage is suspected, then you need venesection to reduce iron overload.
If your levels are only a little bit elevated there are other reasons for high ferritin, and although H63D HFE mutation is associated with haemochromatosis it doesn't guarantee, just as an absence of known faulty genes doesn't eliminate heamochromatosis.
What are your ferritin & T/S% levels?
scan looked fine but saturation 68 and ferritin 620 but now 420 so they want to see what iron is actually in li ber as 6 days ago changed guidelines for people with h63d to not vivesect if no major symptoms and without huge levels .but hepatology all agree they should do it but need to persuade haematology to go against guide lines
Could this be haemochromatosis?
Possible HH and panicking a bit about damage to joints and other organs
High level of Ferritin after Venesection?
high ferritin, low serum?
Newly diagnosed with Hemochromatosis
