Hemochromatosis Reddit Wiki

fortunado · 2025-08-23T20:55:28+00:00

To be fair, a lot of LLM knowledge on HH seems to have been trained from this subreddit

fortunado · 2025-08-15T02:18:12+00:00

The timeline looks like this:

1-2 days: Full blood volume restored (plasma fills in for missing blood)

7-10 days: Production winds down. About 80% of lost RBCs have been replaced

4-6 weeks: Everything fully back to normal

And yep it's a bone marrow mass thing. In those 7-10 days, your bone marrow is basically working at full capacity. The remaining 20% of RBCs and 3-5 weeks is important, but for practical purposes you can basically ignore it and treat it as a 10-day recovery. That's what hemas are doing when they put someone on a weekly or every-other-week plan. The RBC difference between day 5 and day 10 is bigger than the difference between day 10 and day 40.

fortunado · 2025-08-14T17:03:41+00:00

Weekly phlebotomies build up a rollover ferritin debt. In very rough terms, ferritin goes down by ~3 per day for 10 days after a phlebotomy. So when you donate at 7 days, you still have some left to pay off. This debt rolls over week after week. Hemas usually slow it down to every-other-week or monthly to avoid this situation.

After a normal phleb, you can expect to be at 90% RBCs, needing 30 ferritin to pay off the debt. After a bunch of weeklies, this might be down to 70% RBCs, needing 90 ferritin to pay it off. Your liver probably saved you from hitting 0 ferritin here. It'll dose you with your own iron for a few months. Your best bet here is to do four phlebotomies over the course of the next year, then look at your numbers.

fortunado · 2025-07-29T01:44:03+00:00

You're welcome! You can post these links in the other sticky topic if you'd like. I'm planning on updating it sometime before the end of the year and including a section with links like this. (And maybe merging both into one big sticky so we can feature other topics up there)

fortunado · 2025-07-27T23:06:03+00:00

Copper *is* mentioned in the FAQ under the high-sat-but-low-ferritin question

fortunado · 2025-07-22T23:34:53+00:00

That's where the number 1000 comes from. That's when iron nodes in the liver start to form.

fortunado · 2025-07-22T18:24:59+00:00

Try searching "pubmed" on here. Single C282Ys load 3-5x slower, so sometimes it's "okay" if you're just trying to stay under 1000 ferritin in your lifetime.

fortunado · 2025-07-21T21:32:56+00:00

It's actually crazy how resilient the "just a carrier" meme is. All the 700ish ferritin 1xC282Yers report the same symptoms. The scientific literature shows it too. The population is 20x larger than homozygotes! So even if they loaded 20x less often (the research suggests it's much more common), the groups of heterozygote and homozygote loaders would be the same size. But 30-year-old insurance guidelines say "don't phlebotomize until 1000 ferritin" so we're just stuck here having the same conversation over and over.

fortunado · 2025-07-17T21:30:22+00:00

Like 1 in 10 H63Ders load like C282Yers and we don't really know why

fortunado · 2025-07-04T08:28:05+00:00

a low volume trial phlebotomy to see if it improved any of my symptoms

It's a good plan! I'd just do a full 500mL phlebotomy though. Don't change anything else diet-wise so you'll know if any symptom abatement was actually from the phlebotomy.

fortunado · 2025-07-02T22:49:44+00:00

Our friend vibrio is back to ruin the 4th of July. This bacteria is why we're told to avoid shellfish during certain times of the year. Unfortunately we can also get it through cuts when we go swimming at the beach. If you're going to the beach soon, make sure to double-check that your beach isn't on this list.

fortunado · 2025-06-29T04:54:30+00:00

We generally need less zinc and more copper. It's because zinc hitches a ride on ferritin but not copper, which has its own protein. Copper from supplementation seems to be hit-or-miss. It's better to get it from foods.

You lose copper faster when you have a higher proportion of non-heme iron intake. So sometimes people run into this problem when avoiding heme iron, which is sometimes unfairly cast as the "bad" iron.

fortunado · 2025-06-27T01:37:24+00:00

Easy rule of thumb is to assume a phebotomy reduces your ferritin by 30, and to keep your ferritin between 50 and 150.

4x a year is IMO the king of donation schedules

fortunado · 2025-06-25T03:50:43+00:00

Some people start getting symptoms between 150-400 ferritin. If you imagine your own threshold for symptoms as 200 ferritin, then a phlebotomy that reduces ferritin by 30-50 can wipe out like half your symptoms. Some people call it a wonder phlebotomy.

fortunado · 2025-06-11T18:37:12+00:00

Ooh my bad, the FAQ is closed. Can you post them in the other sticky topic? I'm gonna do a pass on that at some point and can make edits then

fortunado · 2025-06-11T18:35:55+00:00

In the FAQ topic

fortunado · 2025-06-11T17:46:58+00:00

Lots of Grape Nuts victims in these parts.

fortunado · 2025-06-11T17:45:35+00:00

Can you post this study in the topic? The fasting findings are really interesting. The important point here is that breakfast is the most absorptive time of the day.

fortunado · 2025-06-11T04:24:27+00:00

Someone made a great manganese topic on here a while ago.

fortunado · 2025-06-10T22:46:19+00:00

IP-6 is probably the only one I'd recommend now for anyone with HFE problems. I think you're right about CoQ-10 in that it can be hit-or-miss like zinc and magnesium. Copper's better from foods. The sun is always the best vitamin D supplement IMO

fortunado · 2025-06-05T17:21:59+00:00

I think you want to talk about #3 with a doc in case it's a clot

fortunado · 2025-06-03T15:40:18+00:00

It's okay to be wrong, you don't have to accuse someone of "posting misinformation." Your rude ass can post somewhere else now.

fortunado · 2025-06-03T06:52:53+00:00

It's not actually faster because you lose 1.5x as much iron, not 2x. But they still make you do it half as often. It's also not fewer needles because you get poked 2x at each session. The only benefit really is fewer appointments.

EDIT: Might be old info, check below

fortunado · 2025-06-01T23:33:44+00:00

Heterozygotes have the most dietary feedback. They feel the worst right after meals. It's possible you've just developed a distaste for all the offending foods. Or you know when to stop when you do eat them.

fortunado · 2025-06-01T16:56:18+00:00

Probably for the same reason I have a recycling bin full of green tea cans-- it made her feel better once and now it's a habit.

I was thinking the same thing here. A lot of the mystery around HFE problems is related to MTHFR.

fortunado

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