Reddit mentions of The Iron Disorders Institute Guide to Hemochromatosis

I got my testing through 23andme and promethease.com a few years back. 23andme wasn't identifying hemochromatosis at the time on their website, but they did test for the alleles, so data could be analyzed by third part sites. Similar results. Key differences: I'm male and in my fifties.

The good news is, not everyone with your genetic pattern has symptoms and organ damage. My tests came back better than the doctor expected.

Fasting so you can get blood work done is a good idea.

Long term this is something you can manage. Even with the same allele patterns different people have different experiences. I have three siblings that are homozygous and three nieces/nephews. One brother and one sister (significantly younger than me) started to have serious health issues in their thirties--mostly fatigue, manageable liver issues, and in one sister's case hearing loss . I somehow didn't start feeling effects at all until my fifties when fatigue hit.

My nieces and nephew learned about this as teenagers and are set up to prevent serious complications.

In all these cases blood testing, imaging, regular blood draws, and serious diet changes made a huge difference.

The Iron Disorder's Institute Guide to Hemochromatosis is the most comprehensive single source for information that I've found, even if it is somewhat amateurish in its presentation and varied writing style. It's a compilation of accurate and verifiable information in an accessible format that could use a style editor, but since you're not reading it for the literature value, who cares?

Things that make a difference for me: donating blood every two weeks (prescription required), cutting out all red meat, cutting breakfast cereals and other iron fortified foods, and giving up my cast iron cookware. My family members follow similar patterns.

You can do this. You can have your genetics and still have a healthy life.

Your 23andme results are enough to know you need to take action. Your doctor may or may not want to take the test results you have as a basis, but you can insist. I took in my full results plus a $5 (now $10) promethease.com evaluation, and the doctor accepted that as valid tests that didn't need repeating. You'll probably also want an abdominal ultrasound to estimate the amount of organ iron build up you're dealing with and a full iron blood panel work up. These tests will need to be repeated on occasion to decide on how often you should be giving blood. Here's a diagnosis flowchart so you will be able to talk to your doctor about what you need. By the way, I declined biopsy, and the doc. agreed because the genetic tests, ultrasound, and blood panels gave enough info to make good decisions without punching a hole in my liver. If you read up, you may well be aware of things that your doctor may miss. :) Many doctors, even specialists, don't deal with this very often.

Also being a woman means you have a slightly lower chance of having serious iron overload! A monthly period when you're not pregnant means blood loss that depletes iron stores. Pregnancy means nutrients (including iron) have to sustain two and that helps as well.

Having your kids tested is smart. Mine are all heterozygous which is fantastic.

TLDR: You can manage this. Get to a knowledgeable doctor. Read the literature. Cut red meat and iron fortified foods like breakfast cereals. There is hope for a functional and happy life even if some damage has already occurred. You're reasonably young and female. Both of these things are plusses for hemochromatosis!

Edit: added more diet information and clarifications and you're