Seems like one of my challenges now is to balance my fluid levels and subsequently my weight. Three months ago, I weighed 239 lbs with a lot of fluid buildup. With treatments including diuretics like Lasix, I was down to 198 lbs on March 10. Unfortunately, my blood pressure was also down to 99/63 sitting and 77/44 standing and I was faint and light-headed. I got IV fluids and dropped the Lasix and blood pressure medicine. Then in the next week, I gained ten lbs back. After switching back to Lasix, I spent last weekend running to the bathroom. I actually urinated 20 times within a 24 hr period on Sunday and every 20 minutes during the first hours after taking the Lasix. Today, my weight was down near 190 lbs so the clinic told me to stop the Lasix again until Wed. I think this is all complicated by my diet and salt intake. So I need to monitor my weight every day and find a level of Lasix that will be just enough.
On my iron level issue, my last ferritin test was unbelievable at 11,000. Dr says it was inaccurate because of my liver so will test again next month. The last reasonable level measured was about 4000, still about 10 times the normal level. My blood iron saturation level was 86% where normal is between 20 and 55%.
I just bought "The Hemochromatosis Cookbook" from the Iron Disorders Institute. The book and the website are good sources of info on iron retention problems and dietary solutions. I am trying to figure out what foods are best to eat since some are a source of iron and others inhibit iron absorption.
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