foo on patrol wrote:From my knowledge on the blood letting, it picks the suffers back up in the energy levels a day after, MM. :wink
Yes in general disposition, but not during exertion from my experience. It takes me more than a week to pick up again. The medical people tell me it takes 3 weeks for blood levels to return to normal.
Have you had the genetic test yet? What levels are your saturation and ferritin at last test?
I'm H63D positive in genetic testing. My highest saturation was 64 and ferritin was 573. Now I'm 30 and 89 respectively at last test, which was 22 months after my highest test and before my last 3 monthly venesection. I've just changed to 6 monthly venesections. My next tests and venesection are due in December.
Having relatives that have Haemochromatosis, you probably know the following. But for those who are new to Haemochromatosis...
There are two types of iron in food. Heme iron and non-heme iron. Heme iron is generally found in animal products and gets absorbed at a rate of 25%, where non-heme iron found in plants is absorbed at an approximate rate of 2 to 15%. Avoiding animal products is a given for avoiding increased blood iron saturation, but I've also found that green leafy veg can raise my blood saturation. I heard the tip about green leafy veg from another person with Haemochromatosis and proved it to myself by changing my diet between tests.
Iron studies have two main indicators. They are saturation and ferritin. Saturation is a more short term indicator which shows at what rate you are absorbing iron between test periods, while ferritin is a more long term indicator of stored body iron. You generally need both saturation and ferritin to be high and also test positive for the gene test to be fairly sure you have Haemochromatosis. Other things can raise you iron levels like stress or NAFLD. My father recently has a ferritin of 583, but a saturation of just 30. He doesn't have Haemochromatoisis.
To be absolutely sure, specialists can order tests like a liver biopsy or MRI. I got an ultrasound about 21 months ago (as I refused a MRI) which showed I had mild liver damage. But a follow up test last month made no mention of that damage. So the situation can improve.
As much as some specialists like to give the impression that diet doesn't matter for haemochromatosis, many peoples' experiences suggest it does. One of the main reasons (other than Haemochromatosis genetic type) why some need venesections (long term) every couple of months, while others get to 6 months or more between venesections, is diet IMO. I usually track my diet and either avoid or use high iron content foods sparingly. It's working well for me so far and I hope that trend continues.
and the nurse had to massage the arm to get it going again. 
