• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

anemia & cfs

Wishful

Senior Member
Messages
5,740
Location
Alberta
My guess is that other than impaired general health by low iron making ME worse, they're probably unrelated. Some members have reported taking iron supplements. You could try searching the forums for 'iron supplements' or some such terms.
 

nina22

Senior Member
Messages
174
I was diagnosed with anemia first and then later re-diagnosed with CFS. My iron levels have always been low but they dropped dangerously around the same time my CFS symptoms began and I am bedridden two days before my period every month so I do believe there is a connection. My doctor says anemia is a common symptom of CFS but that doesn't mean they are the same illness, they may just exacerbate each other. Tests have not been done. Iron shots did not help my CFS anyway. My CFS episodes around my period may be related to any hormone changes too. Let me know if you find out more information, I'm curious too.
 

Tammy

Senior Member
Messages
2,185
Location
New Mexico
just started iron supplements but the gi problems of cfs make it difficult.
Have you ever tried plant based iron? Easier on the gut.

Just my personal opinion...........I think there is a link between bacteria/viruses and anemia. Doesn't necessarily happen to everyone who has a bacteria or virus..........maybe it depends on the strain and what is being attacked (ie.......bone marrow).
 

GreenEdge

Senior Member
Messages
602
Location
Brisbane, Australia
... I am bedridden two days before my period every month so I do believe there is a connection...
I hope this helps:
Click on the following link and watch the video starting from time 6:10 because there's a drug called Fluoxetine that that you can take for just 2 days each month at about a tenth the normal dose to temporarily raise the hormone Allopregnanolone. This keeps GABA in check and may help with feelings of anxiety and low energy levels.
https://www.abc.net.au/catalyst/premenstrual-syndrome/11013070
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
Anemia means low levels of red blood cells, insufficient oxygen to the cells, and fatigue.

But the fatigue from anemia is not the same "fatigue" seen in ME.

I had an episode years ago of severe anemia, so severe that I qualified for a blood transfusion. But in my experience, the fatigue from anemia was nothing compared to the "fatigue" of ME.

My doctor says anemia is a common symptom of CFS but that doesn't mean they are the same illness, they may just exacerbate each other

Somewhat low iron levels may be common in ME, as they are in all inflammatory disorders, but I don't think outright anemia is that common. But if someone does have both, the two conditions might exacerbate each other.

thanks everyone. i just started iron supplements but the gi problems of cfs make it difficult.

Yeah, some iron supplements can be hard on the stomach. Personally, I take the "protein chelate" form of iron supplement, which is supposed to be easier on the stomach. But still, I make sure to take it with food.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Everyone with ME / CFS does not have low iron. Some people have high ferritin, which is known as an "acute phase reactant," a marker of information, though iron is actually high in this case. Some of us have high ferritin which indicates hemochromatosis, a very common genetic condition in Caucasians, which is iron overload.

In any case, too much iron is toxic, too little or too much could cause fatigue, so testing and making sure you got the right level before or while supplementing is wise. For iron overload/hemochromatosis, the treatment is to have a phlebotomy, i.e., having blood removed at regular intervals.
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
i just started iron supplements but the gi problems of cfs make it difficult.

Here are some notes about iron that might help:
*Increasing with molasses*
From Judee on PR:
I've read where a lot of people who had been taking supplements said taking blackstrap molasses worked better for absorption and their test numbers went up when they used that instead.

*Vitamin C dramatically increases absorption*
From: https://anemiacentral.com/iron-absorption/

[Site includes study references]
* ...the amount and timing of Vitamin C also matters greatly, so just saying that Vitamin C increased iron absorption is not enough...
* Vitamin C’s importance in this piece of the puzzle for iron absorption can’t be stated emphatically enough since iron absorption may even rely on the presence of Vitamin C to occur. In fact, there have been many cases of iron deficiency being resolved only when Vitamin C was added!
* [Absorption] First of all, Vitamin C doesn’t just improve iron absorption, it DRAMATICALLY increases it. This is an extremely well-studied subject, and studies using even minimal amounts of Vitamin C with iron minimally show a doubling in the amount of absorption of iron, and maximally up to 6 times.
* [Dose] The dosage of Vitamin C for the maximum iron absorption is surprisingly small. Basically any amount of Vitamin C improved iron absorption. Even dosages as seemingly insignificant as 20 mg were effective at improving iron absorption,. While larger amounts improved absorption even more, it seems that maximum absorption peaks at just 100 mg of Vitamin C.
* [Timing] This is good news since it’s pretty easy to get 100 mg of Vitamin C when you eat basically any fresh, uncooked fruit. But Vitamin C content drastically decreases when food is cooked or stored, additionally, the _Vitamin C must be taken or eaten at the same time_ as the iron supplements or iron rich meal. That might not sound hard, just have some fresh vegetables with red meat at dinner, right? Wrong. Iron is absorbed poorly or not at all in the evening meal, so your steak is almost worthless for its iron content. This is because iron is maximally absorbed first thing in the morning when the hormone Hepcidin is lowest.

*Iron deficiency research results*
From Wonkmonk on PR:
I had iron deficiency in the past, and looked at many natural ways of how to improve iron status without supplements, and this is what I've found:
- Iron from meat sources (esp. red meat) is much better in bioavailability than iron from plant-based sources
- Iron of meat sources is to a much lesser degree or even not at all susceptible to factors that prevent iron absorption (it is called hem iron and has a special, very robust absorption mechanism)
- Consuming milk at the same time or within a few hours lowers the bioavailability of plant-based iron sources
- Vitamin C strongly improves iron absorption from all sources, in a study in India, iron deficiency in kids disappeared when they took 200mg pure Vitamin C with every meal.
- Meat protein (also from fish and other seafood) improves iron absorption from plant-based sources when consumed at the same time
- Organic acid in many fruits improve iron absorption from plant-based sources, tartaric acid (mainly in grapes) is especially effective, but citric acid (e.g. oranges), and malic acid (e.g. apples) also helps.
- Vinegar (all kinds) improves Iron absorption - probably it's because of the acetic acid.
- Avoid foods with high phytic acid content when eating high-iron foods at the same time: https://en.wikipedia.org/wiki/Phytic_acid#Food_science
- Avoid any other mineral supplements when consuming a high iron meal (they intertere with absorption), esp. Calcium, Magnesium. Natural sources are ok.

So a kind of meal that would be beneficial in terms of iron would for instance be: Lentils (high in iron, but bioavailability is low), whole grain rice or bread (fair amount of iron), plus some meat or fish (ideally red meat), plus an orange (citric acid + Vitamin C) plus a few grapes (tartaric acid) plus (if your stomach tolerates) a tablespoon of vinegar) and 200mg pure Vitamin C. As a vegetable, broccoli or kale would be good to add. Avoid any milk-based products 3 hours before and afterwards.

Generally the recipe would be: Any high-iron plant based food plus some meat or fish plus some fruit (ideally including some grapes) plus green veggies (but no spinach!) plus pure Vitamin C and avoid any dairy products for 3 hours before and afterwards.

I don't need any iron supplements anymore and I have maintained ferritin at about 100 (range 30-250).

*Testing is important*
From: http://www.tiredthyroid.com/cofactors.html
Iron deficiency anemia should be verified with blood tests before anyone supplements iron. Because iron is used by bacteria and cancer cells for their growth, it is imperative that one have a full iron panel to rule out something called anemia of chronic disease, which can also cause a low serum iron reading, low transferrin saturation percent, and low hemoglobin. [19] Supplementing iron in this case amounts to feeding the pathogens, which is not a good idea. It also defeats the body’s protective mechanism of limiting available iron when pathogens are present. The body is purposely shunting available iron to ferritin to get it out of circulation and out of the pathogens’ reach.

A non-constipating supplement form of iron, ferrous bisglycinate, is highly recommended by several forums. Liver pills are another option. Iron infusions have some serious drawbacks that one should be aware of, including fatal allergic reactions.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
Everyone with ME / CFS does not have low iron.

Actually, some people with ME do have low iron.

I do. Each time I test below the safe range for iron, my doctor has me do a 3-month iron supplementation program to bring my iron levels back into the safe range. And 6 months after finishing the 3-month program, my iron levels drop back below the safe range. And the cycle continues...
 

Judee

Psalm 46:1-3
Messages
4,494
Location
Great Lakes
The thing is I think many times doctors test for iron anemia but don't check the ferritin levels at the same time. It is possible to have low iron and yet high ferritin which indicates an inflammatory state or a protective measure your body is taking to hide your iron from bacteria, etc.

I talk about it in this post #5: https://forums.phoenixrising.me/thr...itin-liver-and-blood-work.81448/#post-2299280 (The attachment is by the Iron Disorders Institute and very useful if you have both going on at the same time.)

My Mom had this and we were starting to go to a hematologist because taking iron was not raising her levels...well because her body was then grabbing the iron and hiding it. It could have meant she had some form of cancer or it could have just been because of inflammation and autoimmune.

I also suspect she had EBV and that in some way that was affecting this. I talk about that in this post: https://forums.phoenixrising.me/threads/moderate-nerve-inflammation-in-both-legs.82047/#post-2307706

By the way, the hematologist was wonderful and wonderfully knowledgeable and he did not want her taking iron supplements except for saying she could eat foods high in iron like liver and molasses. I really do think however that the resveratrol (that I talked about in that 2nd thread) was doing something helpful with whatever was going on with her.

Both she had and I have one of the hemochromatosis genes that Learner1 talks about and that can cause other problems but it should not (from research and also what this doctor said) cause the hiding away of the iron. It's suppose to take having both genes for that to be an issue.