Iron Overload

It has been said here before but, with all the new people on the forum, perhaps it is time to say again that iron overload is downright dangerous. 1 in 200 people of North European descent have the condition Genetic Haemochromatosis, which can lead to irreversible liver damage, heart disease, arthritis, chronic fatigue and a long list of other problems. It is hard to diagnose so it's likely that there are people on this forum who have the condition and don't know it.

So you should really have your iron levels checked before taking iron supplements in the long term. And since medical opinions on iron levels keep changing, you need to ask exactly what your level is and not just accept 'normal'. Levels of 75-100 serum ferritin are recommended on this forum for RLS sufferers but I hope someone else can provide the reference for that because I have forgotten where it came from.

The Haemochromatosis Society (haemochromatosis.org.uk) says that levels of serum ferritin significantly over 300 in men and post menopausal women, and 200 in women are potential evidence of Genetic Haemochromatosis.

[datsoon1]

personally i dont find iron helps, i am trying little bit of magnesium

[Kaarina Administrator]

Hi Ptilium

Thank you for posting. I see you have been a member for a few years.

The forum has recently been flooded with postings on the merits of taking Ferrous Bisglycinate and quite a few members, who have been concerned, have continually emphasised that it is of the utmost importance to discuss iron with a doctor and to get ferritin levels checked before embarking on taking iron supplements long term.

We very much hope that those reading postings about taking iron also read that they are urged to discuss this with their doctor in the first instance.

[NoMoRLS in reply to Kaarina]

Yes. Check with you Dr. Mine is very high so extra iron is a no go. And it doesn't work for everyone. Always worth a try tho if you can stick with it thru symptoms

[Hidden]

Thank you for your post Ptilium. Some of us cant stress enough to getting a ferritin level test done by their doctor, BEFORE they start taking iron of any type. There are 3 people that i know of on this forum that has a ferritin level way above normal and it would be dangerous to add any type of iron. I really hope the newbies on here who maybe dont know this, take note.

[Madlegs1 in reply to Hidden]

I just know she is talking about me!

The irony of my story is that in investigating rls , I got a ferritin test , expecting it to be very low, as I'm always too anaemic to give blood. Great shock when it came back at 1100!!.

So- an important figure to know.

However- there is a difference between high ferritin and blood iron and iron overload. Not a simple question at all.

And I still have rls.😢

[Jaywell in reply to Madlegs1]

How complicated. Thanks for sharing.

[Hidden in reply to Madlegs1]

My ferritin level was 300+ when I was diagnosed with Heamochromatosis. Venesections got it down to the 20s, which is what the medics thought was an appropriate level 10 years ago. Now they are more relaxed let me aim for 100. My RLS got really bad around the same time my ferritin levels were very low but getting back up to 100 hasn't reversed that. As you say, there is no simple relationship.

[NoMoRLS in reply to Hidden]

Yup. I'm one

[Jaywell]

Thank you for this valuable information. This forum is so helpful. Have as good a day as you would all like to have.

[Hidden]

I think Irish/Celts are more prone to it than 1 in 200. No one should take anything unless they are educated on it.

I can't say I would ever go to my GP to ask about something like iron as he will say waste of money. However I am aware of the signs of too much iron so know I am safe taking what I am.

[Hidden in reply to Hidden]

I go every year most every year for a check up. I've had the same doctor for 20 years now. He's a good man he wouldn't keep something as serious as that from me. things like that meaning blood work always normal. Besides like you I would waste my money. Insurance won't cover in between blood tests.

[Hidden]

Eitheror, it depends if your doctor knew to do a ferritin level or not. Some doctors do not know that low ferritin level can be a reason for RLS. Normal ferritin level is not normal for people with RLS. The experts say for RLS it should read 50-70 altho most now have raised that number to 100+. Even if your ferritin level was low and taking iron to get the number up, doesnt mean you would be RLS free as it doesnt work for everyone. BUT, it can be worth trying.

[nightdancer]

YES, excellent post. I talk about this all the time in several groups. People should not just run out and start taking iron just because they see it on a forum. Iron overload, as you say, is VERY dangerous, so it must be tested and discussed with your doctor first, always.