Hemochromatosis?: I haven’t yet been... - Haemochromatosis ...

Haemochromatosis Society UK

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Hemochromatosis?

rupertj profile image
8 Replies

I haven’t yet been diagnosed but these are my latest labs

Iron: 129

Ferritin 117

Uibc 106

Tibc 255

Iron saturation 58%

thoughts?

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rupertj profile image
rupertj
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8 Replies
isi123 profile image
isi123

Hello.

Ferritin and iron levels are within the normal range, although saturation is somewhat elevated. Why do you suspect you have hemochromatosis?

rupertj profile image
rupertj in reply to isi123

From what I’ve gathered high saturation can indicate hemochromatosis despite ferritin being normal range. Especially with uibc and tibc being low

isi123 profile image
isi123 in reply to rupertj

In the very early stages of hemochromatosis it is usually one of the first signs, but it is only an indicator of many others. There are other causes that can increase it, for example inflammatory diseases. If you have a history of hemochromatosis in your family and you are beginning to go through menopause, you should tell your doctor; he or she will most likely repeat the test in a few months.

If it is hemochromatosis, it is a silent disease but it takes years to cause damage and at that time the values ​​are much more altered.

rupertj profile image
rupertj in reply to isi123

Thank you. I am in the brig inning stages of menopause and miss periods frequently. Going on three months without now. No one in my family has hemochromatosis that I/they know of

rupertj profile image
rupertj in reply to isi123

we are repeating in three months but everyday I’m walking around thinking major damage is being done

isi123 profile image
isi123 in reply to rupertj

It's unlikely that with those values, any harm is being done. I had a ferritin level of 1200 when I was diagnosed, and upon reviewing old blood tests, I had been having values close to 800 for years. So, while you shouldn't stop addressing the situation, don't let it keep you up at night either.

Remember there are other causes that can explain a slight increase in saturation and ferritin and not be anything serious.

Autumn_Leaves profile image
Autumn_Leaves in reply to rupertj

Please don’t worry yourself sick about these blood test results. There’s nothing there to suggest you are in any danger.

Autumn_Leaves profile image
Autumn_Leaves

Haemochromatosis is a disease of iron overload. A ferritin level of 117 does not suggest you have iron overload. TSAT of 58% isn’t hugely elevated by any means. My consultant haematologist does not pay too much attention to this figure because it is subject to variation and fluctuation, so isn’t a reliable indicator of iron overload. I’ve come across many people who google a blood test result and become convinced that they have haemochromatosis when they don’t, and convince themselves that they are at risk of the worst possible scenario and pin every ache and pain onto their self-diagnosed “haemochromatosis” (which they don’t have). Don’t be that person!

I suggest you look at any supplements you are taking for iron content and also check your intake of fortified foods. I know that in the UK where I live bread and bread flour is fortified with iron. Breakfast cereals are another common source. Also check your consumption of vitamin C, particularly in supplement form. Vitamin C increases the absorption of iron. People with haemochromatosis are advised not to consume vitamin C supplements, and guess what? We do just fine without it. It doesn’t “boost” your immune system, cure or prevent colds, or any of that. Also your diet, particularly your consumption of red meat and especially organ meats. When I was diagnosed I was advised to avoid liver and organ meats. Anything else, like protein powders or meal replacement products or shakes? Check the ingredients as they may fortified with iron and/or vitamin C. If you can reduce your iron consumption your TSAT will probably normalise. It’s not that high anyway, and mine is never that low. Many people with haemochromatosis have TSAT levels of 90-100%. One marginally raised blood test result may not be significant. Don’t overthink it. You can always donate blood if you’re able to.

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