Does Iron help?

[Rebarns]

Hi,
I'm just wondering does taking liquid iron such as floradix help anyone with ME/CFS to decrease fatigue at all?
Friends keep suggesting it to me, (I haven't been diagnosed with ME yet, so people see me as "tired") but I have been tested for anemia and I'm not anemic. So just want to know can it help?
Thanks.

 

[pamojja]

I would supplement with Iron only after having done a complete iron panel (ferritin, iron, transferrin, transferrin saturation and iron binding capacity), since more often there could be iron overload to begin with.

 

[Rebarns]

Thanks @pamojja
I don't know where you are based but I'm in the UK and it's very hard to get the tests you need on the nhs! You pretty much just have to take what they give you and count yourself lucky if you get anything!
So as far as iron is concerned I only know that I'm not anemic!
So is iron overload more prevalent than iron defieciancy in ME/CFS?

 

[pamojja]

So is iron overload more prevalent than iron defieciancy in ME/CFS?

Wouldn't think so, compared to other populations. It's more prevalent in omnivores, males and postmenopausal females.

If there is difficulty getting a whole iron panel, I would at least try to get ferritin tested. Conventional medicine doesn't recognize it below a ferritin of 400 ng/ml in males. Functional medicine already cautions of it with any value above a 100.

 

[valentinelynx]

If you're not anemic, specifically with iron deficiency anemia, which comes from large or persistent blood loss, you're not likely to need extra iron. The body does not have a way of disposing of excess iron, so if you are not losing blood regularly, you are probably not iron deficient.

 

[Rebarns]

@valentinelynx that's what I thought, if I'm not anemic I probably don't need extra iron, but friends keep suggesting it, because they don't understand that I'm not "just tired" I'm chronically fatigued!!!

 

[andyguitar]

Suggestions you have been getting to 'take more iron' are a fairly typical response @Rebarns as the relationship between iron deficiency and fatigue are very well known. So it's more of a knee jerk response than anything else. But at least they are trying to be helpful.

 

[Wishful]

I agree with andyguitar: common treatments for common fatigue probably won't help, because ME isn't common fatigue. What we feel has some things in common with how normal fatigue feels, but the underlying basis is probably quite different.

Depending on your relationship with the person suggesting such treatments, you'll have to judge whether it's better to try to explain that it's not normal fatigue, or just buy some cheap iron supplements (or whatever) so that you can tell them that you honestly tried it and that it didn't help.

If they're insisting that you try something that's relatively expensive or which you believe is a scam, try insisting that they pay for it, and that you'll pay them back if it proves helpful. Consider it a test of their confidence in the proposed treatment.

Just wondering: does the most common anti-fatigue treatment (caffeine) reduce ME 'fatigue', or does it leave people 'wired but tired'? I gave it up because of insomnia, but it never did anything for reducing fatigue, ME or normal. If caffeine doesn't help with ME 'fatigue', then you can use that as an example for refusing future helpful suggestions. Graded exercise therapy would be another good example.

 

[Ravn]

just buy some cheap iron supplements (or whatever) so that you can tell them that you honestly tried it and that it didn't help

Possibly an ok strategy for other - more harmless - supplements but not for iron.

As @pamojja and @valentinelynx have already pointed out, it really is a very bad idea to supplement with iron without first having a test. There is a condition called haemochromatosis that's quite common in the UK, I can't remember on top of my head but something like 1 in 200 rings a bell.

Anyway, it can lead to toxic iron overload which has all sorts of very nasty implications down the track. Ironically one of the symptoms of iron overload is the same as in iron deficiency, and ME/CFS for that matter: fatigue.

Some diagnostic ME guidelines actually have haemochromatosis listed as a possible alternative diagnosis, i.e. as something that should be checked before making an ME diagnosis.

In other words: get tested first. The full iron panel is best but ferritin will give you an indication.

 

[Wolfcub]

@valentinelynx that's what I thought, if I'm not anemic I probably don't need extra iron, but friends keep suggesting it, because they don't understand that I'm not "just tired" I'm chronically fatigued!!!

I have had the same suggested to me too @Rebarns I have had ferritin tested and it's fine. I do not have pale mucus membranes either. But people do associate fatigue with anaemia and often throw out the idea that you should take an iron tonic!
If you don't have iron-deficiency anaemia, at best it would be a waste of money; at worst it could be damaging.

But of course there is pernicious anaemia, which is a different thing altogether.

 

[Wolfcub]

I have heard the ad for Floradix on the radio, and this kindly old lady's voice saying it helps the "over50's" reduce tiredness, etc
I am not usually a sucker for ads, but I did find myself thinking... I wonder if I should try that...but on learning it's a basic iron tonic and contains ferrous gluconate, vitamins B1, B2, B6, B12 and C, I decided it wasn't for me.

For the reasons, I am post-menopausal by 16 years, already eat iron-containing foods in moderation as part of a balanced diet, and the B vitamins and C I have already tried (with no amazing effect and sometimes even a paradoxical effect at higher doses.) I also think many with ME/CFS have tried these vitamins too in many forms, with mixed results. They help some but not others.

 

[Rebarns]

@Wishful

Depending on your relationship with the person suggesting such treatments, you'll have to judge whether it's better to try to explain that it's not normal fatigue, or just buy some cheap iron supplements (or whatever) so that you can tell them that you honestly tried it and that it didn't help.

Although the latest person to suggest this to me is actually my best friend, it just wouldn't work trying to explain it, she seems to think if I "believe" it will help then it will!?
A while back I tried iron supplements, before I new I wasnt anemic and what was actually wrong, and it didn't help so I stoped, I have told this to her and others but, they just don't get it!

Just wondering: does the most common anti-fatigue treatment (caffeine) reduce ME 'fatigue', or does it leave people 'wired but tired'? I gave it up because of insomnia, but it never did anything for reducing fatigue, ME or normal. If caffeine doesn't help with ME 'fatigue', then you can use that as an example for refusing future helpful suggestions. Graded exercise therapy would be another good example.

I don't use caffeine and don't have decaffeinated drinks...so I don't actually know...although when I have had it on occasions it doesn't seem to make any difference...accept maybe keeping me awake at night 😃

 

[Rebarns]

hecked before making an ME diagnosis.

In other words: get tested first. The full iron panel is best but ferritin will give you an indication.

I wish it was that easy, it's so hard to get anything on the nhs!!!

 

[Wolfcub]

@Rebarns Maybe it might help if you tell your friend you have had iron tested and there is no deficiency. And taking too MUCH iron is dangerous if there is no deficiency.
But a deeper iron test (and see if you can ask the doc. for your numbers) might also be useful.

Im in UK too and NHS. Nice doctor, but the blood panel just gives ferritin levels. Even if you ask for a copy of the test results, the lab. will just state "normal levels". So you could perhaps ask the doctor if you could get the precise numbers.

 

[Rebarns]

I have heard the ad for Floradix on the radio, and this kindly old lady's voice saying it helps the "over50's" reduce tiredness, etc
I am not usually a sucker for ads, but I did find myself thinking... I wonder if I should try that...but on learning it's a basic iron tonic and contains ferrous gluconate, vitamins B1, B2, B6, B12 and C, I decided it wasn't for me.

Floradix is the one my friend is suggesting to me...although I'm not nearly over 50 😂 (I'm 20) I have also seen the advert for it "tired of being tired?" But as you say it's just a basic iron tonic with some vitamins....and sure it probably helps people with anemia etc but that's not me!

 

[Rebarns]

@Rebarns Maybe it might help if you tell your friend you have had iron tested and there is no deficiency. And taking too MUCH iron is dangerous if there is no deficiency.
But a deeper iron test (and see if you can ask the doc. for your numbers) might also be useful.

I have told her I don't have a defiencency, but you know what it's like they want to think they have the answer, she means well of course, but maybe I'll tell her about the dangers of overloading iron...

 

[Remi]

There is research suggesting iron levels above 70-80 help with fatigue. I'm currently trying to get there after a full iron panel I ordered privately. I'm now around 60 I think; as I also inject b12 it goes very slow. Tried to up my dose, but it gives me a stomach ache.

As I'm also hypothyroid and am still tweaking my med for that, I won't be able to say what helped if I'll feel less exhausted. But for thyroid to function, b12 needs to be right, and for b12 to be right, iron, folate and b6 need to be right. So I'm taking it all at once.

 

[Wishful]

Although the latest person to suggest this to me is actually my best friend, it just wouldn't work trying to explain it, she seems to think if I "believe" it will help then it will!?
A while back I tried iron supplements, before I new I wasnt anemic and what was actually wrong, and it didn't help so I stoped, I have told this to her and others but, they just don't get it!

Yes, we not only have to deal with the symptoms of ME, we also have to deal with people who refuse to listen. Try whatever you think will work best. If she won't accept that overloading iron is dangerous, go ahead and tell her that your doctor warned you against it. If a person refuses to accept facts (I tried it and it didn't help), then lying isn't really wrong if it makes both of you happier. You don't need extra stress.

 

[Remi]

Wanted to update that my iron has been over 80 for some months now. Also thyroid levels are optimal. It does help a bit, I can take walks more often. Slightly less brainfog. But B12 still not good.