anemia & cfs

[L'engle]

Whenever I've had tests they've been for ferritin, but I've only been getting them in the last 15 years. I had low ferritin the first time. I had some hope that I just had anemia, but improving my ferritin only improved my condition(me/cfs) up to a point. I have to keep on top of it though or it's just another thing making me even more run-down.

 

[Pyrrhus]

Digestive problems perhaps?

That is indeed a possibility. Actually, it's two possibilities:

1. Intestinal inflammation might reduce absorption of iron.
2. Intestinal inflammation might lead to high levels of intestinal shedding of epithelial cells, which would lead to increased loss of iron from the body.

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.

And that's a third possibility!

 

[L'engle]

Thanks @Judee for your informative posts!

 

[Learner1]

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.

That is not necessarily true. I have only one risk copy of each of two different HFE variants. This resulted in a milder case, making it more tricky to diagnose, but my ferritin and iron saturation went up to unsafe levels. Though HFE C282Y is the most well known gene for hemochromatosis, other HFE variants and variations in other genes can cause problems.

 

[Bergkamp]

I have made steady progress for the past ~2 years but all of a sudden progress stalled a few months ago. Felt more fatigued, dizzy than usual and had bad muscle weakness (even got sore muscles while brushing my teeth). Saw these were all symptoms of anemia and then my mom said my eyelids were super white (which apparently is indicative of anemia) so had myself tested.

Was positive for anemia but iron levels were within the range (all the way at the lower bound though, and i was already taking iron supplements for a few days at the time so I might've also had low iron). Ferritin was normal. Started taking iron supplements (combined with vit C and b12) in the morning 2 months ago. Am a bit better than before but still not the way I was before this all started. Eyelids still very white as well. How long does it normally take for anemia to correct?

 

[aquariusgirl]

I had low ferritin (20...more recently 29 ) for years. Iron levels all normal. heme supplements turned the lights on .....but my docs were confident my iron was ok. Strange, right?

 

[Rufous McKinney]

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

there is a liquid from Sweden i think, called Floradex, which is a very good way to get IRON. Its not cheap but known to be effective. and may cause less issues with digestion.

https://floradix.co.uk/product/floradix-liquid-iron/

 

[andyguitar]

.but my docs were confident my iron was ok. Strange, right?

Could be a lab error.

 

[nina22]

I had low ferritin (20...more recently 29 ) for years. Iron levels all normal. heme supplements turned the lights on .....but my docs were confident my iron was ok. Strange, right?

Doctors usually have to follow a designated iron range for diagnosis. It was my ferritin that was low too. Suddenly I dropped from around 50 to 30 then 19 in two months but they would still say I was fine until I got to the set bar of 13 and then they diagnosed it as anemia and started IV sessions. My ferritin came back up with IV injections but I still ask for a blood test every 6-8 months just to make sure it isn’t dropping too quickly again because I still don’t know what caused the fast drop.