I hope someone with more knowledge than me replies. What is your diet like? Are you getting plenty of protein and nutrient rich foods? I also have HH...blood panels seem to be unlike those of acquired hemochromatosis -- I hope you get energy soon...I find COQ10 to help with fatigue..

Under 20 is pretty low for sure - I think some folks can tolerate it, but it's probably not ideal for all. What is your hemoglobin like? It sounds like you've been overbled, which can lead to anemia and symptoms like you're experiencing.
Here's a pdf on iron avidity, which is a little different than your situation because your tsat is low too, but may have some good info for you on the risks of lowering ferritin under 20.
http://www.irondisorders.org/Websites/idi/files/Content/1050668/IronAvid-all.pdf

According to the Hemochromatosis Cookbook, the Iron Disorders Institute recommends increasing red meat consumption to bring depleted iron back into balance. Do you take vitamins? B12 and folic acid are important for helping your body make adequate red blood cells, which can increase your energy levels and help you feel better. B12 is generally considered safe in larger doses, so you could try a supplement for a few weeks and see if it helps.

The same thing happened to me. I passed out after giving blood. Four months prior my SF was 11. I landed in the ER and they checked me for a Heart attack. No heart problems. I suffered thrum several months of fatigue, pain and lack of energy. MY obgyn did blood test and found my SF @ 6. Against her directives, I started taking a childrens chewables with iron. One per day. Everyday I got stronger and stronger. I took these for about one month. Two months later my SF was 15. One year later I am @ 41. I will be donating soon. My plan is to always have labs before donating. I might be gluton intolerate which would account for why my levels don't increase like the Dr thought they would. I am female age 56 post menaposal.

ccastells,

Take charge of your own health and learn to say, "No" to your doctor. The doctor hasn't a clue how to treat HH. If possible, find another doctor.

I've been at this since 1998 and at this point in my life my hematologist, let's me make the decision to phleb when it's borderline such as ferritin or TS% above 40.

I have found I'm at my best when they are around 30.

BTW, what your hemoglobin/hematocrit? You can be anemic as a HH person.

Hemoglobin was 16 today when I donated blood today. I am resting tonight. I am glad that's over with. The nurse said it was high. I told her that mine runs high.

There's new information about iron and on the redcross.org\iron website. Hemachromatosis is mentioned. I don't know what they mean about under a Dr treatment.

Update - With extra care and plenty of rest, I am back to normal after donating on Friday. I didn't feel the need to take an iron supplement. Yeah!

Thanks Bob. Good information.

I agree with Bob.

For others who may read this thread, (not the OP). An exception to this rule may be made for some people if TS (saturation %) is above 45% (typically the point at which iron starts to load into organs) even though your SF is low, then some people will have a reason to keep their SF at a lower level. (I think I've seen Bob say exactly this before, please correct me if I'm wrong Bob)

I don't think you need to worry though given your TS is only 16%, you should fit with what Bob has said. Good to hear you are feeling better.