I was diagnosed with haemochromatosis around 4 years ago and after venesetcion treatment reducing my iron levels to normal my fatigue has gradually improved although I wouldnt say i ever fully recovered.
My iron levels unexpectedly spiked earlier in the year and then my fatigue dramatically increased in the summer and has been bad ever since.
Has anyone else had relapses like this? What experience have others had with their levels of fatigue post treatment?
Steve
I have only had two venesections as the first one did not result in any significant blood removal. Since I was first given a diagnosis and haven't ever ha any of the side effects of the condition, I'm not able to help with your post treatment fatigue. If the iron levels increase, I would guess the fatigue would also reoccur. The only time I've experienced fatigue was after giving blood. I felt as if my body was going though a withdrawal from not having the iron (which is purely speculation). Have you been following a diet associated with hemochromatosis. My Doc feels that the diet is "key", but again I'm realatively new at this. I will know on Friday how the second venesection worked. Since diagnosis, I have eliminated most "red meat" from my diet and tried to abide on the low iron foods. I purchased the Hemochromatosis cookbook, which has valueable information other than the recipes. Good luck on your fatigue.
Has your hemoglobin fallen under normal levels. I'm starting to understand that it's not only the ferritin that needs to be watched but also the hemoglobin levels. Even with high ferritin it's my understanding you can be anemic which causes fatigue
I havent had the test results from my latest test results yet but they were fine when they were tested a couple of months back.
I have been advised that controlling the condition thru diet alone is conter productive. Having said that I do try to avoid foods that are high in iron. In particular I try to avoid, liver, spinach (although this may be ok) and seeds. I dont eat a lot of red meat and mostly eat chicken and fish day to day. I am also completely tee total that seems to have the biggest effect.
People involved in the research of HH do not recommend eliminating foods high in iron, with the exception of liver of course. Also clams are reported so high in iron, I wonder if it is a typo! High iron in spinach is a fallacy, besides it is a non-heme iron. Similarly seeds - pumpkin and walnut have the highest. Avoidance of packaged food supplemented with iron (bread, cereals, etc), and vitamin supplements containing iron is VERY important.
The Hemochromatosis Cookbook explains all this so I don't know how Mrs Z equates that info with the (so far) wrong info by her dr. There is iron in every food with the exception of cream, some cream cheeses and whiskey and we can't live on them!
This book will also explain that drinking tea, coffee, milk with meals, and eating calcium containing foods like cheese, yoghurt, taking calcium supplements with meals all supposedly help reduce the uptake of iron. Avoid vit C and juices high in vit c with meals which increases the uptake of iron. Although I think vit C and all other anti-oxidants are important to us. Take vit c between meals or last thing at night on an empty stomach.
Now for the fatigue question. I have been deironed for 13 years and I still experience crippling fatigue. Sorry about that. I think my problem is because my gp took 9 years to diagnose me giving the iron plenty of time to deposit and damage my organs, bones (had to have hips replaced), muscles, etc. I went from superwoman to being unable to work at all and struggle through the day.
I had a breakthrough this year when I started taking 100mg of aspirin each morning. I felt lighter, walked faster and got more done during the day. However, I still crash and burn early - straight after an early dinner.
I have discovered that my body does not like sugars and starches. After I have eaten anything like that, I feel like a truck has run over me, and I physically slump. Research has revealed that we with HH do not digest these types of food very well. And if we continue, it leads to diabetes.
Look for the cookbook in your local library, or ask them to get a copy in for you. They can borrow from other libraries.
Sorry, that should be pumpkin and sunflower seeds (not walnut)! HH brain!!!
Thanks sheryl37154, I have also started taking an asprin a day and have noticed a fairly significant difference, and although I am still fatigyed, it has allowed me to get back into work part time. Although I would wish my fatigue on no one its reassuring to know I am not alone.
My wife is ordering the Hemochromatosis cookbook now
That is fantastic, stevetrov, that it has made such a difference for you.
I wonder if others have tried the small aspirin dose daily. I would love to get feedback from others who have.