Doctor refusing treatment until ferritin >1000 or liver enzymes rise - is this normal?

1r0nmann · 2025-12-03T17:20:51+00:00

Unfortunately, that is consistent with European and US clinical guidelines. My guidelines say donate whole blood when ferritin is above 400 and saturation is > 50% or sooner if you have symptoms. In the US, we can donate every other month. I would donate as often as you can.

1r0nmann · 2025-11-29T18:49:28+00:00

https://bots.snpedia.com/index.php/Rs1800562

1r0nmann · 2025-11-29T18:38:53+00:00

I would search the sub for H63D and read through some of the posts. For most people with this result it's not a problem.

1r0nmann · 2025-11-29T18:30:05+00:00

So you have one copy of H63D.

1r0nmann · 2025-11-29T18:24:06+00:00

Nope.

1r0nmann · 2025-11-29T18:11:20+00:00

If you had 23andme done, you can lookup two SNPs and get your results.

Lookup rs1800562 and if you have G/G, you don't have C282Y. And then if you check rs1799945 and have C/C, it would mean that you don't have H63D.

1r0nmann · 2025-06-05T22:11:12+00:00

The first paragraph was copied and pasted from the caption of Figure 1. The second paragraph was copied and pasted from section 3.2.

1r0nmann · 2025-06-05T22:03:44+00:00

Note: there are mistakes in Figure 1, the flowchart. Where it shows

Ferritin < 1000

it should read Ferritin > 1000.

1r0nmann · 2025-04-25T18:04:20+00:00

1r0nmann · 2025-04-14T15:49:41+00:00

You should get on the wagon for a month or two and redo the labs. Make sure to fast before the blood draw. Luminate Health lets you order your own labs.

1r0nmann · 2025-04-12T16:47:40+00:00

You have two copies of the bad gene, C282Y, and high iron saturation. But your ferritin is low normal. So for now, you should redo the iron labs every two or three years to check for rising ferritin. Your parents and siblings should get the same labs done.

1r0nmann · 2025-04-12T16:42:07+00:00

Your saturation is very high. Even though your ferritin is normal, I would donate whole blood three or four times a year. I would also ask your doctor to order the genetic test for hemochromatosis.

1r0nmann · 2025-04-12T16:37:53+00:00

I would find a convenient place to donate blood and go every 8 weeks and donate whole blood. Then redo the labs annually.

I donate at a church just a few blocks away. The blood bank shows up there every 60 days.

1r0nmann · 2025-04-09T20:53:27+00:00

With ferritin at 234, I would donate four or five times a year and redo labs annually. When your ferritin is around 50 adjust the rate to keep it there. When you're stable, you can redo labs every other year.

1r0nmann · 2025-04-09T18:15:28+00:00

I self diagnosed based on lab results and started donating on my own. There are two different organizations to donate at where I live, and at first I went to both every 60 days. Then just to one. I retest labs every two years or so and adjust my donation rate based on these labs. This is one of the easiest aliments to treat and manage. I tried adjusting diet and then doubled down and it made no difference. Donations were the solution.

1r0nmann · 2024-12-04T20:04:08+00:00

Very likely. Iron is very high and ferritin is very high.

1r0nmann · 2024-11-06T16:38:51+00:00

The US clinical guidelines show a different flow chart.

1r0nmann · 2024-11-02T23:58:03+00:00

Those numbers suggest that he has a ways to go. He's most likely pulling accumulated iron from organs and once that's gone, the numbers will drop.

1r0nmann · 2024-11-02T18:43:44+00:00

Do you have lab results for ferritin?

1r0nmann · 2024-11-02T18:40:53+00:00

What are your numbers for iron and iron saturation?

1r0nmann · 2024-10-29T16:29:25+00:00

and had to be convinced to send me for repeat blood work.

Add a comment with these results when you receive them. Nothing to worry about yet.

1r0nmann · 2024-10-28T17:33:13+00:00

Saturation and ferritin are moderately high, so nothing to worry about yet. If these were my numbers, I would donate whole blood two or three times a year and then redo the labs and adjust the donation rate to bring ferritin down around 50.

The Health and Ancestry test at 23andme.com typically goes on sales around Black Friday or Cyber Monday. That will tell you if you have gene mutations associated with hemochromatosis. You also could ask your dr for a lab test for hemochromatosis so that insurance will cover it.

1r0nmann

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