It makes sense to me that there may be other problems that cause fatigue once a person is de-ironed. I also do not have any thyroid problems and as long as I do my phlebbs every three weeks I have no fatigue at all except on those days of the phleb.

I wish I knew the answer so it can be fixed.

My doctor told me I have low thyroid. Can you show me some article or something that shows this could be because of HH. He shrugged it off.

My doctor told me I have gall stones and shrugged it off. My liver doctor never even told me about it.

They shrug it off because as I was told "It's the least of your problems."

I have only been deironed twice but have felt so much nausea and fatigue and have no idea what is in store for me. I am off work for maybe the next 3 months or so and am really looking forword to gettting back. My phlebotomies are once a week and hopefully could be put off for every 3 months once my level is attained. Is this reasonable?

Welcome FFK2! Everybody responds to phelbotomy differently. It has no effect on me at all. Are you eating well and hydrating yourself really well prior to the phlebotomys? They also have me recline during the phleb. My first phelb (in Dec 2010) was a nightmare (I even passed out). Now it's no big deal at all. But, again it is different for everybody. Once a week is not uncommon to start out with. Once they get your ferritin down to an ideal maintanence level (should be 50 or less), you should be able to cut back on the frequency. However, even the maintance frequency will depend on how quickly you load (iron). Once they start to cut you back, they will need to continue to monitor your ferritin to see how quickly you load. Have you checked out the Iron Disorders Institue web site (www.irondisorders.org)? It is a wealth of information and even has a "Hemochromatosis Newbie's Starter Kit" that you can download. Sure hope you are feeling better soon! Keep us updated on how you are doing!

I was diagnosed January 1998
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Currently, I get tested every 3 months but may get plebbed a couple of times a year. It all depends on lab results especially the Transferrin Saturation % (my SF generally stays in the 30's). I find that when my TS% goes above 40% I get brain fog and fatigue easily.