Iron / ferritin levels: My levels: iron... - Restless Legs Syn...

Restless Legs Syndrome

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Iron / ferritin levels

ookla profile image
19 Replies

My levels:

iron

- 139

ferritin

- 67.5

The iron level is good (right?), but what about my ferritin level? Is ferritin also supposed to be over 100?

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ookla profile image
ookla
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19 Replies
Parminter profile image
Parminter

Ideally, your ferritin levels should be above 100. Below 75 means take action.

ookla profile image
ookla in reply to Parminter

Thanks for the response, greatly appreciate it. :)

Hi ookla it is recommended for our ferritin level to be 100+, and you can try to get it to that level, BUT, it doesnt mean it will help your RLS, its not set in stone. Mine is over 100 and i still have RLS, and its still severe. So, it a matter like taking our meds, you need to find out if it works for you.

ookla profile image
ookla in reply to

It's like trying to nail jello to a wall.

DicCarlson profile image
DicCarlson

I would supplement with Ferrous bis glycinate to raise the Ferritin level. there is another marker called % saturation that probably needs to be above 25%. Iron is a key marker for RLS - but as many people have found out, circulating Ferritin can be high but somehow it is dysregulated in the brain affecting dopamine. You can read more here... hopkinsmedicine.org/neurolo...

ookla profile image
ookla in reply to DicCarlson

My iron saturation is 50%, so I guess my iron levels aren't the culprit. :(

DicCarlson profile image
DicCarlson in reply to ookla

Here's the deal - I had raging RLS - none of the docs said anything about my Ferritin level being low (it was 49, in the normal range). I found out myself from Johns Hopkins "A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy... on average improved RLS symptom after 3 months." I originally used blackstrap molasses to raise iron levels - and it cut into the RLS. I then used Ferrous Bis-Glycinate daily and RLS symptoms vanished in a week! I wouldn't leave it hanging - 15% of RLS is serum/iron related. The stuff only costs $5 US. The questions remain - why only 15%? And why was iron depleted anyway?

ookla profile image
ookla in reply to DicCarlson

If you don't mind me asking, what were you taking and how often were you taking it? Some places says to take 25 mg three times a day. Some places say anything over 85 mg a day is not anymore effective. And some places say multiple doses aren't effective, just take one daily dose. I'd like to give it a shot, but I'm on my own with it and I don't want to do it wrong.

in reply to ookla

I’d be interested in knowing as well. As of now, I take 25mg Amino Iron every day. That is the recommended dosage on the box, but is that too little?

LotteM profile image
LotteM in reply to

Jess and Ookla. Don’t know by heart about amounts, also because that depends on the type of iron you take.

About the frequency of doses, it has been researched and shown that when you take iron, it triggers a feedback-loop in your body. The more often you take iron, the less well it gets absorbed. Taking an iron supplement (on an empty stomach, combined with vit C to enhance absorption) only once a day or even once every two days increases your ironlevels at the same rate as taking iron 3x a day - which is/was the traditional way. And as taking iron in high amounts several times a day often leads to constipation, the once daily or once every two days option is the least burdening and equally effective one.

But... always have you iron and ferritin levels checked (by your gp) before you take iron and have it checked again at regular intervals when you take an iron supplement. High iron loads can be dangerous!

in reply to LotteM

Ok....thanks. I got my levels checked about 10 days ago and am still waiting to get the results (it was a short work week, so it’s taking longer than usual).

DicCarlson profile image
DicCarlson in reply to ookla

Sorry for the delay - just saw this. I took 18mg Ferrous Bis-Glycinate, just once a day for perhaps 6 weeks, then 3 x week, then just once a week. I haven't taken it now in months. It really was an eye-opener for me, especially the Black Strap Molasses (taken in the middle of the night, and lessened symptoms) - then I knew it was iron related. Still plagued with sleep issues, but the debilitating RLS is just a shadow of what it was.

Bonbon32 profile image
Bonbon32

I have a chronic iron load from my blood cancer to many transfusions my levels is 2000 for it from 5000 I get flabotomy s now often to try and get it all out

Bonbon32 profile image
Bonbon32

Normal level is 120 but

Bonbon32 profile image
Bonbon32

I have severe anxiety and rls but my doc has never mentioned it could be because of my iron levels .... wonder if that it is it ??

ookla profile image
ookla in reply to Bonbon32

Whenever I'm having a problem with anxiety, I eat something sugary and that seems to calm me down for some reason. I keep a bag of marshmallows in my pocket.

Bonbon32 profile image
Bonbon32 in reply to ookla

I’m diabetic :( bitnalwaus keep candy for different reasons lol

Parminter profile image
Parminter in reply to Bonbon32

' Iron deficiency is also linked to Restless Leg Syndrome (RLS), adult hearing deficits, reduced strength, coordination, and endurance, anxiety, increased heart failure morbidity, decreased intellectual performance, and erectile dysfunction among many others conditions.'

From rls.org/research--grants/cl...

Bonbon32 profile image
Bonbon32

Oh I know all about it hun has 2 bone marrow transplants been sick all my life cured 10’yrs now with many complications and still have the chronic iron overload which is going down with the flabotomys .... but have been suffering for 2 years now with what they call RLS but it’s my whole body not just my legs which they say is caused from anxiety which I have severe as well just started new meds and hope they work cause it’s and awful feeling ... but reading your comment makes me think mane I feel this way because i have to much iron

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