Iron Deficiency Without Anemia (IDWA)

[Rexz]

In my "I'm Alive!" post yesterday I discussed my crashing with effectively no iron in my system with a condition called Iron Deficiency Without Anemia (IDWA). As promised here is a more detail discussion of that condition that anyone with autoimmune PA/AIG should keep their eye on.

Knowing that iron malabsorption is an issue with PA I started asking for serum Ferritin to be added to my periodic blood testing starting in November 2020. From then on, I watched my ferritin and iron levels trend downward with each blood test over the last 2 years. This also seemed to correlate with my fatigue and other symptoms getting worse like fatigue, heart palpitations, restless legs syndrome at night, brittle nails etc. Then in January my blood test showed my ferritin was below normal (a normal persons “normal”). The Lab I use in the US is LabCorp and their normal range is stated as 30 to 400 ng/mL. When I expressed my concern to my doctor she just flippantly said, “well you are not iron deficient because your blood work is not showing anemia”. Blood work meaning my RBC and Hemoglobin were within normal range.

My serum Ferritin levels over time (unit of measure is ng/mL). As I describe later, even though my ferritin levels were within normal range of 30 - 400 ng/mL, I was actually iron deficient since January 2021.

Nov 2020 = 112

Jan 2021 = 78

Jun 2021 = 64

Mar 2022 = 45

May 2022 = 30

Jan 2023 = 22

Seven Iron IV infusions between February and April

May 2023 = 111

Iron deficiency without anaemia: a diagnosis that matters

This is a great paper.

ncbi.nlm.nih.gov/pmc/articl...

Non-anaemic iron deficiency

ncbi.nlm.nih.gov/pmc/articl...

In this study you will find a table 2 that states a person with an inflammatory state low normal of Ferritin should be considered <100 ng/mL. Not <30 ng/mL for general population.

Iron deficiency without anemia – a clinical challenge

ncbi.nlm.nih.gov/pmc/articl...

Here’s an article reference.

Iron deficiency Without Anemia-Why It Matters and How To Diagnose It-Three Resources

tomwademd.net/iron-deficien...

To note that those of us with advanced PA/AIG experience a double whammy of not being able to absorb iron plus having your body sequester (make it unavailable) to your body and pathogens to use.

Here’s a great video on why with chronic inflammation such as those with PA/AIG low ferritin levels should be considered at <100 ng/mL versus <30 ng/mL.

youtube.com/watch?v=DbQeaiv...(Not working as expected?)

If you’ve autoimmune PA (this used to be called Pernicious Anemia Type A), caused by Autoimmune Gastritis (AIG) then keep an eye on your serum ferritin levels and if they are below 100 ng/mL and presenting telltale symptoms of iron deficiency then take these papers to your GP. It is a good thing to have your serum Gastrin level checked also as high levels of Gastrin can indicate low/no gastric acid. Low /no Gastric acid is thought to be the cause iron malabsorption. If you have any questions please let me know either reply to post or DM me.

Again, I’m no doctor but rather a regular Joe finding my way through this.

Hope this helps, Rexz

[deniseinmilden]

That's really interesting, thank you!

I'm glad you've improved enough to be able to write it. I hope your improvement continues.

I too have been iron deficient without standardly recognised anaemia and have had to work hard to improve things. I found that supplemental iron alone wasn't working and I needed to drastically increase my haem iron intake from red meat and fish to get well. I generally make sure I keep my sources of haem iron and calcium apart by at least a couple of hours to clear my digestive system of calcium to improve the uptake of iron (calcium locks up iron).

[Rexz in reply to deniseinmilden]

Denise, Interesting note on the calcium I will keep that in mind. I am definitely improving and now just another thing I have to monitor and treat.

Thanks, Rex

[deniseinmilden in reply to Rexz]

I seems to feel like that all the time, doesn't it: and another thing to add to the list! You need eyes in the back of your head and clear thinking just to keep your body alive, don't you!Good luck!

[KBird01]

Thank you for sharing these articles Rexz this explains so much about what I first presented with to the GP nearly 5 years ago. Having taken control of my treatment, including supplementing with iron in early spring, I am already feeling better than I have for years, both physically and mentally. Good luck on your journey to wellness. 😊

[Mixteca]

I was referred to a gastroenterologist and asked him about a Gastrin level test to check for low stomach acid. He didn't know what I was talking about...am in the UK 🤔

[Mixteca]

I'm now in a very difficult position that is impacting on my health exactly because I've iron deficiency without anaemia and my levels are low but 'within range'. My transferrin saturation % is 18 but my haemoglobin's 'normal'. Have a ferritin level of 41. An iron specialist advised an iron infusion as the lack of it's impeding my B12 repair and recovery. He said 18% was a significant iron deficiency. However, despite being offered one at an NHS hosptial and being very ill, I was actually refused. The doctor knew nothing about B12D and cofactors and wouldn't budge from guidelines/the numbers. He only considered haemoglobin and didn't take those other levels into account. 😭

[Holiday12345]

hi Rexz

Just read your experience with iron ferritin on another b12 post and linked to this post. I’m U.K. so NHS works different and impossible to get information. Our NHS ferritin ranges are 15-300 I usually sit about 20-30 been as low as 3 (felt like death) and highest @49 after supplementing daily for few weeks. But the thing is my haemoglobin is always good (probably due to every time my iron is checked I’ve been taking a couple weeks iron supplements as I’ve been feeling bad again. Last iron was 15.7 so just over top of range (15) and ferritin 24. My GP said ok to supplement iron but I’d read that if your haemoglobin is high it’s dangerous and can cause a dvt….? Having had a small stroke I’m concerned. Do you know anything about that? I know my ferritin needs to be about 70-100 but does the low ferritin indicate inflammation? Or poor methylation (hypothyroid too low Vit d, folate, ferritin and b12 not sure real number as I’ve taken supplements before testing.) I’m female so think ferritin tends to be bit lower than a guy.

Many thanks

[evilellie]

Thanks for posting this, I've had pernicious anaemia for about 8 years, and just had some blood tests done, which found ferritin level of 13.8, although I do have a very slightly high RDW (14.2 where the normal range is 11.6-14.0). This also happened when I was being diagnosed with pernicious anaemia - they said I wasn't actually anaemic, but I had low B12 and anti-IF antibodies, and had got to the point where I was blacking out frequently and couldn't stay awake (among other things, but that was obviously the biggest problem!), so I think I suffer from the symptoms quite a lot even without actually being anaemic, which is what these studies speculate, but they don't seem to really know why some people can have such low ferritin but not be technically anaemic still.

[Rexz in reply to evilellie]

Hi evilellieYeah medicine still knows little about how this fantastically complex bio machine that we live in works.

I too have wondered and research that question of why some and not others regarding anemia. I can only speculate that it may have something to do with the chronic inflammation and your bodies associated chronic sequestration of iron stores.

I have asked and perused countless papers trying to answer the "how much is being sequestered?" I had eleven iron infusions in 2023 and wonder as we put more iron in how much of each infusion is also being sequestered? No answers and no data to be found on that question.

Best wishes, Rexz