Looking for advice..hemochromatosis

The usual treatment for iron overload is to give blood at local blood bank every other month until the iron saturation level get to below 50% and ferritin gets back to within normal limits. I have been a blood donor for 65 years, not knowing that I had iron overload. Would have been dead long ago if by chance I hadn't been a donor. Get a simple iron panel blood test

What were your iron levels when you got your blood work?
Maybe the highest. My daughter blood work just came back. 166 ug/dl

Total serum iron levels typically range from 26–170 mcg/dL in women. Your daughter at 166 ug/dl is within the range.
Is this up considerably from previous years?

I think last year was 150.

Newly diagnosed and have had two sessions giving blood. Have others had follow up labs afterwards? I don’t seem to get guidance from my PA and seeing doctors takes months. It is my understanding you give blood week or weekly until numbers are good. What has been others experience? Also, any suggestions on getting a dietitian versed in iron overload.

Have you been diagnosed with hemachromatosis?

My father passed from it. They had to do audopsy. He was at 34 hospitals with no answers.

My brothers were tested and have it. They have to donate blood every month to keep iron down. It’s weird because I’m anemic.

Too much iron sits on organs and eats them.

I was diagnosed several years ago. I had intermittent fatigue, joint pain, hemorrhoids, I seem to be getting sores from biting my cheek, although some were not from a bite injury because they weren't on my inner cheek.. I constantly had digestive noises. One day I started having difficulty with my eyesight while reading. I'm probably missing other issues

I tested high ferritin, very high saturation, slightly anemic. I went out of town to get genetic testing because I was told I had to wait, with no timeframe, to get an appointment in town.

I did a year, 1 unit of blood every 2 weeks. Now yearly I do 1 to 3 donations. My saturation can still be very high. My ferritin target is 50. I still have intermittent joint pain. I bite my cheek stil occasionally which results in a blister. Intermittent fatigue, I woke up freezing a few times even though it's not cold

And more that I am forgetting, ....... Oh.. brain fog .....

I'd a least skip large portions of meat. But other than that giving a lot of blood can be draining. Do what you need to do to keep your energy up. If you're having digestive issues work on that otherwise I'd wait until you're in maintenance mode to make other diet changes. That's just my opinion

I was slightly anemic when I was diagnosed.

You've been genetically tested ?

If not, you should, regardless,
if your brothers have it.

My range was up to 149 last time checked but the objective is to get to 50. I’d expect I’ll do a withdraw next month.