Some CFS patients just have Iron Deficiency Without Anemia, an internist found

[pattismith]

Esa Soppi is an internist in Finland.

Clinical data is emerging and showing that many patients may remain in prelatent or latent stages of iron deficiency without progressing to anemia [2,3,7-9].

During my 30-year carrier as a consulting internist I have met hundreds of patients, mainly menstruating females, who have sought medical advice for prolonged (1–35 years) fatigue, brain fog, muscle and joint pains, weight gain, headache, dyspnea, palpitations (sometimes associated with sleep disturbances), arrhythmia, lump in the throat or difficulty in swallowing or restless legs.

Over time, the patients have often received a spectrum of diagnoses and corresponding treatments: subclinical hypothyroidism, fibromyalgia, burnout, overtraining, asthma, somber mood extending from melancholy to severe therapyresistant depression, chronic fatigue syndrome and chronic Lyme disease.

It is important to include iron deficiency without anemia as a differential diagnostic possibility, because this type of iron deficiency is

Iron deficiency without anemia – a clinical challenge (nih.gov) 2018

low-ferritin-20220-1.pdf (joyrichhealthcarecenters.com) 2020

Some NIH doctors in UK also warn against IDWA

Iron deficiency without anaemia: a diagnosis that matters (nih.gov) 2021

 

[motorhead]

I sure check a lot of boxes in iron deficiency, I'll buy this ferrous sulfate tomorrow and report back. Thanks for sharing, surprised this didn't get replies.

 

[perrier]

The main problem for many severe ptwME is tolerance of iron supplementation, due to chronic GI distress. So it is very hard to get the numbers up. Iron IV works but is hard to obtain and the severely ill cannot just pop into a day clinic.

any suggestions welcome for how to increase these values!!

 

[Shanti1]

It is a good idea to check ferritin (or even an iron panel) and not just rely on a CBC to check for iron deficiency. The blood count markers are the last to drop as someone one moves through the established 3 stages of iron deficiency. Here is a lab demonstrating this point from a 16yo with heavy menses (posted with permission). Note the normal-looking CBC despite obvious iron deficiency on other markers.

I sure check a lot of boxes in iron deficiency, I'll buy this ferrous sulfate tomorrow and report back. Thanks for sharing, surprised this didn't get replies.

Make sure you have low ferritin (if you haven't already). Taking iron if you don't need it can be damaging to the body.

The main problem for many severe ptwME is tolerance of iron supplementation, due to chronic GI distress. So it is very hard to get the numbers up. Iron IV works but is hard to obtain and the severely ill cannot just pop into a day clinic.

any suggestions welcome for how to increase these values!!

Iron supplements in the form of ferrous sulfate can be particularly hard on the GI. Many people do better with iron forms chelated with an organic molecule, such as iron bisglycinate. I've heard good reviews on the product Floradix as well. Another option to try is a heme iron supplement since iron is most easily absorbed in the heme form, the supplement ProFerritin is an example.

My husband wasn't able to get his iron up through oral supplements (even the heme ones) so we do an IM injection once every two months, which has worked really well. It is much easier than IV iron and we do it at home. I think it is not used much because of injection site pain and staining the skin if some of the iron gets into the outer layer of the skin, but we have never had trouble with either of those. It may be something worth asking about if oral iron doesn't work and IV iron is not feasible.

 

[perrier]

It is a good idea to check ferritin (or even an iron panel) and not just rely on a CBC to check for iron deficiency. The blood count markers are the last to drop as someone one moves through the established 3 stages of iron deficiency. Here is a lab demonstrating this point from a 16yo with heavy menses (posted with permission). Note the normal-looking CBC despite obvious iron deficiency on other markers.

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Make sure you have low ferritin (if you haven't already). Taking iron if you don't need it can be damaging to the body.



Iron supplements in the form of ferrous sulfate can be particularly hard on the GI. Many people do better with iron forms chelated with an organic molecule, such as iron bisglycinate. I've heard good reviews on the product Floradix as well. Another option to try is a heme iron supplement since iron is most easily absorbed in the heme form, the supplement ProFerritin is an example.

My husband wasn't able to get his iron up through oral supplements (even the heme ones) so we do an IM injection once every two months, which has worked really well. It is much easier than IV iron and we do it at home. I think it is not used much because of injection site pain and staining the skin if some of the iron gets into the outer layer of the skin, but we have never had trouble with either of those. It may be something worth asking about if oral iron doesn't work and IV iron is not feasible.

Dear Shanti, thank you for your help. We use Floradix but this is a very very mild supplement which simply does not raise the levels adequately. And the levels here are very low, chronically. I will look into ProFerritin immediately. also, of interest is the injection. Is there a name for the product you use? (The iron IV we have used is Venofer, but it is now impossible to go to a clinic due to multiple reasons.) But I can ask about the injection. Did this injection actually raise the levels sufficiently. I don't know if this will be available in Canada, for a G7 country we are so backward, it is frightful--I guess it is cost cutting in socialised medicine.

 

[perrier]

@Shanti1
is this the one? https://www.amazon.ca/s?k=proferrin...609648&tag=googcana-20&ref=pd_sl_1prbity24l_e

 

[Shanti1]

is this the one? https://www.amazon.ca/s?k=proferrin...609648&tag=googcana-20&ref=pd_sl_1prbity24l_e

Yes, that is the one. Other heme supplements may also work if you find something less expensive. The Canadian Society of Intestinal Research actually did a review on ProFerrin (apparently unbiased): https://badgut.org/information-centre/product-reviews/proferrin-heme-iron-polypeptide/
You may also consider taking your iron with vitamin C for better absorption.

Dear Shanti, thank you for your help. We use Floradix but this is a very very mild supplement which simply does not raise the levels adequately. And the levels here are very low, chronically. I will look into ProFerritin immediately. also, of interest is the injection. Is there a name for the product you use? (The iron IV we have used is Venofer, but it is now impossible to go to a clinic due to multiple reasons.) But I can ask about the injection. Did this injection actually raise the levels sufficiently. I don't know if this will be available in Canada, for a G7 country we are so backward, it is frightful--I guess it is cost cutting in socialised medicine.

The IM injections quickly brought my husband's ferritin levels to normal up and continue to hold them steady.
We used a low molecular weight iron dextran. High molecular weight iron dextran has a high rate of anaphylactic reactions. I don't think it is available much on the market, but it is good to be aware. Iron Sucrose (Venofer) had the lowest reaction rate:

https://www.healio.com/news/hematol...anaphylaxis-risk-of-marketed-iv-iron-products

The risk for anaphylaxis at first exposure to IV iron was 68 per 100,000 individuals (95% CI, 57.8-78.7) for iron dextran vs. 24 per 100,000 individuals (95% CI, 20-29.5) for all other nondextran products combined (adjusted OR = 2.6; 95% CI, 2-3.3).

 

[pattismith]

If you want to know if low iron is responsible for your symptoms, you need to raise your ferritin up to 100 ng/ml and your Transferrin Saturation above 20%.

But if your iron levels are low, it may be that you have some problem with non heme iron absorption and supplementation won't be that easy.

IV iron have shown to produce inflammation, and ferrous sulfate may increase pathogenic gut bacteria.

My own experience with iron supplementation to raise ferritin over 2.5 months showed me what works for me, this is my daily iron cocktail:

-iron bisglycinate
-lactoferrin
-red meat

 

[motorhead]

I've got ferritin at 48.5 ng/ml, serum iron is 104mcg/dl.
Other values (check abbreviations):

The supplement I got with ferrous sulfate has 330mg equivalent to 105mg of Fe2+
Not feeling any changes so far.
As for the 'boxes' I was mentioning;
Extremely pale since childhood, way before cfs appeared, cold hands and feet, impossible to fall asleep, poor sense of smell, found this one to be related to anemia only recently.

This study suggests alternate-day dosing (with double the dose) increases absorption: https://www.haematologica.org/article/view/9379
Can give this a try too, hope 660mg ferrous sulfate are not hard on the stomach or possibly switch to bisglycinate as Shanti suggested.

Has anybody tried capsules with beef liver?
I'd much rather have them over actually eating liver.
Anyways back to when I was still eating meat I would have bresaola (air-dried salted beef meat) several times a week but I understand that the iron content of lean muscle parts is not as high as that of liver/spleen.

 

[pattismith]

@motorhead , had you your vitamine B9 and B12 checked?

 

[Alvin2]

My ferritin saturation is low but a month of 50mg iron bisglycinate did nothing to raise it so kinda stuck there.

 

[pattismith]

My ferritin saturation is low but a month of 50mg iron bisglycinate did nothing to raise it so kinda stuck there.

how much is your Ferritine saturation (before and after supplementation)

 

[Alvin2]

how much is your Ferritine saturation (before and after supplementation)

My bad, its MCH thats lower than pre supplementation. The ferritin saturation was tested in 2020 but the doc didn't repeat it.

 

[motorhead]

@motorhead , had you your vitamine B9 and B12 checked?

I have not, I'm about to begin supplementation of them tho (MTHF of course).
I purchased the B12 derma-oils this summer but been struggling financially to buy the rest of the supplements indicated in Freddd's protocol.
I've read about people eventually getting their iron levels back on the B12 oils fb group, however it took more than a year.
Getting quite curios to try beef liver capsules, there's seem to be no indication on how much iron they contain.
Friend of mine gets immediate effects after eating liver and I'd be curious to experiment with that too, bit of last resort being vegan.

 

[Judee]

You may also consider taking your iron with vitamin C for better absorption.

And don't forget copper. The body needs copper to process iron. This page talks about that. https://www.purelabvitamins.com/blog/copper-and-iron.php

 

[Leah_Heisel]

This is all very intriguing to me. A few years ago, my doctor noticed low ferritin levels (15). I started taking 15mg of iron chelate from Rainbow Light (Complete Iron mini-tabs that I broke in half). I took one half every other day while menstrating as she was concerned about raising my iron levels too high. I noticed a difference in energy almost immediately but followed her instructions and only took during my period. Fast forward to a couple of years to a new functional med doc. She wanted to get my ferritin higher (believe it was in upper 20s when I began seeing her) so I began to take 15mg every 3 days (not only while on period) and we did labs of ferritin every few months. Last time I checked in July they were at 54 so well below the 100 that the reports suggests for those with inflammation issues. I still notice a slight boost of energy or a clearing of brain fog when I take them and I've resisted taking more frequently out of fear of toxicity. I'm going to get my levels to 100 or a touch higher to see if this helps. I did try taking another formula but the Rainbow Light has never hurt my stomach or caused any issues as the other I tried did so I'm sticking with it. And I'm going to continue to go somewhat slow. Maybe up my intake to 15mg every other day. I'll report back.

 

[Judee]

I should say that it's important to be checked for ferritin levels too because the Iron Disorders institute says it's possible to have something called Anemia of Chronic Disease where

"...in fact a protective and natural mechanism that the human body uses to limit the amount of iron available when potentially harmful things get into our body."

and

"When the body senses a potential threat, iron gets shuttled to ferritin to be contained so that the harmful invader cannot get to the iron. Just enough iron is made available to make red blood cells but no surplus is left to nourish harmful pathogens. "

https://irondisorders.org/anemia-of-chronic-disease-2/

Low iron but high ferritin will be an indication of this.

 

[pattismith]

This is all very intriguing to me. A few years ago, my doctor noticed low ferritin levels (15). I started taking 15mg of iron chelate from Rainbow Light (Complete Iron mini-tabs that I broke in half). I took one half every other day while menstrating as she was concerned about raising my iron levels too high. I noticed a difference in energy almost immediately but followed her instructions and only took during my period. Fast forward to a couple of years to a new functional med doc. She wanted to get my ferritin higher (believe it was in upper 20s when I began seeing her) so I began to take 15mg every 3 days (not only while on period) and we did labs of ferritin every few months. Last time I checked in July they were at 54 so well below the 100 that the reports suggests for those with inflammation issues. I still notice a slight boost of energy or a clearing of brain fog when I take them and I've resisted taking more frequently out of fear of toxicity. I'm going to get my levels to 100 or a touch higher to see if this helps. I did try taking another formula but the Rainbow Light has never hurt my stomach or caused any issues as the other I tried did so I'm sticking with it. And I'm going to continue to go somewhat slow. Maybe up my intake to 15mg every other day. I'll report back.

You are very lucky that you found docs aware of iron deficiency.
It took me 50 years to find one!

My ferritin was between 11 and 24 during all these years.

Now I'm struggling to raise my ferritin.
My level today is 40 after 3 months, I hope it won't take me 2 years to reach 100!

 

[xploit316]

When the body senses a potential threat, iron gets shuttled to ferritin to be contained so that the harmful invader cannot get to the iron. Just enough iron is made available to make red blood cells but no surplus is left to nourish harmful pathogens. "

https://irondisorders.org/anemia-of-chronic-disease-2/

Low iron but high ferritin will be an indication of this.

@Judee Thanks I have the same labs high ferritin low iron. Any idea what this likely pathogen could be? Is this a virus?

 

[Alvin2]

I should say that it's important to be checked for ferritin levels too because the Iron Disorders institute says it's possible to have something called Anemia of Chronic Disease where

"...in fact a protective and natural mechanism that the human body uses to limit the amount of iron available when potentially harmful things get into our body."

and

"When the body senses a potential threat, iron gets shuttled to ferritin to be contained so that the harmful invader cannot get to the iron. Just enough iron is made available to make red blood cells but no surplus is left to nourish harmful pathogens. "

https://irondisorders.org/anemia-of-chronic-disease-2/

Low iron but high ferritin will be an indication of this.

I've been thinking more and more about this recently, yesterday i got access to most of my blood tests since 2010 (new initiative to link electronic results) and have found borderline low (sometimes a bit over minimum, often a bit below minimum) iron results. No one ever mentioned this out of a half dozen doctors.
Until now i only had the last couple years to look at so i had no idea this is not a recent happening.

I finally got some long standing dental issues dealt with which include long standing infections which might have caused the low iron issues, i tried a month and half of iron supplementation before the dental stuff was done and ended up with less blood iron which suggests my body may be causing anemia intentionally.

How common are these low blood iron issues in ME/CFS patients and could they be contributing to our symptoms?