Iron dysregulation and inflammatory stress erythropoiesis associates with long-term outcome of COVID-19, 2024, Hanson et al

Anyone interested in iron deficiency and/or hepcidin might find these wiki links of interest :

https://en.wikipedia.org/wiki/Hepcidin

https://en.wikipedia.org/wiki/Iron_deficiency

https://en.wikipedia.org/wiki/Human_iron_metabolism

I was very surprised to discover that Hepcidin was only discovered in 1998.

 

I don't know if this is still true - the tests may have improved in the last 10 - 15 years. But the FOBT (Faecal Occult Blood Test) from years gone by had a high risk of giving false positive and false negative results. Just taking vitamin C or eating lots of citrus fruits (which have high levels of vitamin C) or antacids could give false negatives or false positives (I can't remember which).

https://www.ncbi.nlm.nih.gov/books/NBK537138/
https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2729926
https://www.mayoclinic.org/tests-procedures/fecal-occult-blood-test/about/pac-20394112

 

Really hope you/your docs figure it out. Do keep badgering them to follow you up if they're not doing that already or if your levels aren't going up. Good luck with all the tests. Crossing fingers for you.

 

Just wondering how you're getting on now in terms of iron, @Sean ?

My ferritin, transferrin saturation and serum iron have dropped again. In a sense this is good, because I've been feeling extra-crappy and now I know why. My hair is also falling out, having never fully replenished itself after I was severely anaemic a couple of years ago. Am waiting for an iron infusion as I can't tolerate any oral iron supplements.

 

Can I ask is your haemoglobin/haematocrit/rbc ‘not low’ - which is apparently polycythemia (of some type) ?

Or are they all low ?

 

Ferritin, transferrin saturation and serum iron are the only ones that are low for me at this point. All other measures, including haemoglobin, are in the normal ranges. What I have is iron deficiency, and if I don’t get an iron infusion, that will keep going until haemoglobin also drops below the normal range, and it’s offically iron deficiency anaemia rather than just iron deficiency.

I found this which lays out how iron deficiency anaemia develops – I’m probably somewhere between stage 2 and stage 3:

I am not a doctor, but from what I can see, polycythaemia is a different scenario altogether, where haemoglobin can be high, and treatment can include phlebotomy. I’m in the opposite camp.

 

Me too, but it is termed as some form of polycythemia even where ferritin is very low and the rest in normal range (but probably high end)

if the iron is high end or keeps increasing your haematocrit / rbc etc but not ferritin (stored) ie like the proportion (from ‘intake’) going to each is ‘off’ vs normal, rather than absorption if neither are sufficient and the haemoglobin drops next. I don’t know where the line is because you get different causes and there is relative polycythemia etc too (and which of these is that really?)

I mention it because quite a few pwme seem to have this type of thing or polycythemia and because this paper talks of erythropoiesis.

 

@Sean am I reading this correctly that SiderAL Forte has 30,000mg of iron (214%) per capsule??

 

All I know is mine is not a form of polycythemia! I don't have high or nearly high red cell count, haematocrit or haemoglobin.

I can't parse the second sentence so can't comment on that.

Yeah, I dunno, I don't think there's any good evidence of a link between ME/CFS and iron issues, but it would be interesting if there were one. Iron deficiency anaemia is common, and iron deficiency without anaemia even more so, particularly among menstruating females, so there's bound to be plenty of it in the population of people with ME/CFS. We're also probably more likely than the average person to be getting blood tests done so things that might go unnoticed in a healthy person might get documented for us.

 

Have you had your ceruloplasmin levels tested? Mine was below ref range when my ferritin kept dropping for 25 years.

• Role in Iron Metabolism:
  Ceruloplasmin plays a role in iron metabolism, specifically in the release of iron from cells and its transport in the blood.
• Iron Transfer: Ceruloplasmin and ferritin are involved in the transfer of iron in and out of cells.

 

Good to hear how you’re doing.

That’s a long time with unpleasant side effects. Great that you’ve found a supplement you might be able to tolerate better. But it sounds like you’ve definitely earned the right to regular iron infusions!

My ferritin was 2 a couple of years ago when I had severe iron-deficiency anaemia, rose to 154 after an iron infusion, dropped to 23 nine months later, and is now at 9. In females it drops during menstruation so my mean ferritin for the month is likely lower than 9.

I looked back in old tests and ferritin was measured 6 times since 2010 as I worked my way down from mild to severe. It was below the range you quoted 3 times and within it 3 times (but only 30-40). I've no idea if I ever had nice middle-of-the-range levels of ferritin.

I know we’re not in the same position because I’m female and you’re male, but clearly neither of us can hang onto iron for long!

Hope your next test goes well.

Edited to change "nice high levels of ferritin" to "nice middle-of-the-range levels of ferritin" since that's what I meant.

 

I've never heard of it but it sounds blue!

 

What does blue mean?

 

It makes me think of the word "cerulean" which is a shade of blue!

 

In Italy, France etc the comma is used where other countries would have a period so I think it's 30.00mg i.e. 30mg of iron.

 

@Evergreen phew! Thanks for the explantion.

 

Getting back to the Hanson article, this is interesting:

I would like to go back in time, please. With an iron infusion.