I was just diagnosed about 2 weeks ago and have scheduled a liver biopsy. My doctor said nothing about changing my diet, but doing my own research I pulled back on the iron and I am not eating red meat. I also have had some heart pain, I would like to see if anyone can shine some light on maybe why.

Do you have high iron levels? When I went to the hospital (with what I thought was appendicitis) and began the journey to diagnosis and treatment, they initially wanted to admit me as a cardiology patient. Previously, I had no heart issues, and in the ER the doctor put the stethoscope up to my heart and gasped "how long have you had heart trouble?"

I saw a cardiologist along with my GI doctor in the beginning, though the heart issues for the most part cleared up as the iron went down. I'm on beta blockers, though I've cut down on the dose and skip before my phlebotomies as my blood pressure is too low...meaning I'm borderline at needing the medication.

The reason I say all this is that iron likes to deposit in organs and this antagonizes them. If your levels have been high, this could account for your heart issues.

As far as diet, I started following a diabetic diet as it is kind to the organs that the iron likes to antagonize. I felt a lot better doing that and if they haven't told you, try to stick to 2,000 mg of salt per day (the recommended amount for most adults, but most restaurants and packaged foods add a lot of it). I felt so much better doing those two things. You may want to see a cardiologist as well, and see if you need beta blockers at least until your iron is under control.

My iron levels are very high and I have been diagnoised with genetic hemocromatosis. I have been to hospital concerning my heart and they keep telling me all fine no heart attack but pain still there. Consultant has referred me to have an echocardiogram. So waiting on that it seems to take forever...they said nothing about diet but I have been cutting baxk on red meat and very dark green veg.

I think as you get the iron lowered you will see improvement. A lot of things improved, but it does seem slow. If you've been checked out, that seems to be the likely culprit. I had it as well in the beginning.

So how often do you have your blood removed. And what do they do??

I started out weekly, then every two weeks and now monthly. I was at 4,000 to start. Last was 300.

If you have never had a therepuetic phlebotomy it's like a lab draw, only more (with a bigger needle). Generally pretty quick and not painful, like giving blood. Actually the same process as giving blood at a blood bank. Some people just donate there, though they may discard it if iron is high.

Thank you I am still waiting for my treatment to start

Thank you I am still waiting for my treatment to start

I was diagnosed in August and just did my 5th biweekly phleb yesterday. I also have had weird fluttering or subtle pain in my heart for the last year or so plus pain in several joints and extreme fatigue, things I had dismissed as aging. Since starting the phlebs my heart has stopped feeling weird and 3 of the 4 joints don’t hurt! Still tired a lot but the phlebs really wipe me out so I think that’s part of it because after about 10 days I feel great....right before it’s time to go back. Check out the hemachromatosis cookbook, recipes aren’t great but there’s a ton of great info in the front on the best way to eat! It has helped me make some minor changes in diet that should be helping with iron absorption. Might be doing nothing but at least I feel like I’m doing something to help myself! Good luck to you as you start to de iron!