I think you mean ferritin is 2000 as opposed to actual iron. We hh patients live by our ferritin levels, but it's a storage protein made from the iron. That said ferritin of 2000 doesn't happen often without hemochromatosis.

My levels were 4000 to start out. I was having signs of damage but a lot has reversed since then. It's kind of a long road but worth it.

The fatigue is the #1 complaint of getting treatment, as the iron causes it and the treatment does as well. It improves over time but kind of a rough start. My biggest mistake was doing them in the morning. I always left the office fine and it takes about 4 hours till I really feel it. Better are the afternoon draws so I get tired at night.

Avoid sugar. That was bad for fatigue.

Some say pariet is an effective drug to help reduce iron (off label use of a stomach acid drug).

I always felt better after exercise, even if some days I could only walk 5 minutes on the treadmill. The fatigue hits more if I rest, so power through all you need to before sitting down. You feel worse trying to rest and start back up.

I hope it goes well! I am just starting too.

With a ferritin of 2000, you definitely could have some liver issues. I would recommend cutting out the alcohol unless a liver doc clears you and says it is okay.

My liver doc also recommended staying away from supplements and medicines as much as possible since the liver has to process all that.

thanks you guys any information much appreciated,had two more venesections,drank loads of tea and water before hand and felt alot better and levels have fallen to 1575 so things going in the right direction,got a fibroscan in december so fingers crossed.

I am one of those who is taking Pariet tablets. I haven't had a Venesection since August'17. I know I am due for one now as my levels I am sure have increase to over 100. They had only increased by 10 pints the last time I saw my Doctor. Before Xmas. Now I know that does not sound much. Mine were originally 2003. So I know this because symptoms are retuning, joint pain and fatigue. Your body lets you know. My Doctor wanted me to try this. If it means I cut out 1 or 2 venesections a year, then this is a good thing. HH also brings on lots of other illnesses. Unfortunately which I now have some of these. Psoriatic Arthritis, it can damage your immune system, Planter fasciitis. You know you are not well when you cant walk because of joint pain. When your levels are high this is what you will experience. Look back on previous posts. You will get more info from the post on here than what your Doctor knows. Thats because they don't see many with it. Yet it is very common. Just not tested enough.

I think one of the big reasons we feel tired when we have these phlebotomies is because we are not only losing iron, we are losing red blood cells and all the other components of the blood. This means there are fewer blood cells available to bring oxygen throughout the body so our bodies have to work a little bit harder and we do have to regenerate all of that blood which takes time and energy. That's kind of my basic understanding as a science student.
These are some of the things I do to help stay alert/functioning- but I think at the end of the day until your condition is under control the fatigue will be inevitable :(
- COFFEE. From a health standpoint it's not the best thing you can do for your body but a cup a day can make a world of difference for me when I'm really drained
- Avoid carbs and foods that are heavy/fatty/sugary. You'll just generally feel better if you're fueling your body with healthy foods.
- NAP. My doc said that I should listen to my body: If I really do feel exhausted, I might just need to take a minute (especially after a phleb)
- exercise is really good for increasing your hemoglobin and that will make you feel a little better too (from what I've researched, low hemoglobin can make you tired and it can mean they stop phlebotomies until it goes back up)
Best of luck! I hope you get feeling better soon :)