Ferritin levels?? : Hi there everyone... - Restless Legs Syn...

Restless Legs Syndrome

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Ferritin levels??

Jo-BC
Jo-BC

Hi there everyone

New to the forum so go easy. 😬 I had my blood results back (over the phone) today and the receptionist said the GP says everything is normal and no concern. When I asked for the Ferritin level result she said it was 18ug/l.

Now I had previously seen that ferritin levels below 75 are bad for RLS sufferers. Currently still waiting for the practise nurse to ring me back Any advice??

Thank you in advance

Jo

25 Replies

Joolsg or involuntarydancer, can one of you copy-paste one of your usual concise and eloquent replies about ferritin and raising it?

Jo, basically, take gentle iron aka ironbisglycinate every other night before bed on an empty stomach and preferably with vit C.

rsoular
rsoular in reply to LotteM

Why every other night? I've heard that Proferrin is the best because it's most absorbable and crosses the blood brain barrier...? Also why do people say to take the lowest amount that is effective?

rsoular
rsoular in reply to rsoular

My ferritin is 13.5

LotteM
LotteM in reply to rsoular

Because high and/or frequent intake of iron reduces its uptake by the body. And iron intake also may well lead to constipation. It has been researched and assessed that intake once every other day is no less effective than daily intake or even 3x per day intake. Still, raising your ferritin by taking iron is a slow process. May take months. And your ferritin IS low!

rsoular
rsoular in reply to LotteM

Do you know where I can get that research?

LotteM
LotteM in reply to rsoular

When I am at my desk again I’ll find the link and copy-paste it. Remind me if I forget.

LotteM
LotteM in reply to LotteM

Found it! Well, I originally found a news item, bit that is only available in Dutch and I suspect not many people on here would understand. So I tracked down the research paper with the study and results. Also check out the commentary.

bloodjournal.org/content/12...

Jo-BC
Jo-BC in reply to LotteM

Thank you so much for this. More documentation to supply my GP with 😉

18 is too low for rls. If that is an issue for you personally. No harm raising levels to above 100.

Vit B12 1000 + ug as an oral spray is good to help . Must be methylcobalamin.

Liver pate and dried fruits also help.

Iron Disorders Institute has a good adoce on what to do to raise iron levels.

Always get doctor's advice before messing with iron.

Good luck.

Jo-BC
Jo-BC in reply to Madlegs1

Thank you. GP just rang and I had to tell him that the ‘normal’ level he thought was actually severely low for an RLS patient. He’s prescribing me iron tablets and repeat blood tests each month. I already eat a lot of iron rich foods too.

Goodfairy
Goodfairy in reply to Jo-BC

Hi Jo-BC.

What was your ferritin levels then,?

My husband had the tests some time ago and is now trying to find out exactly what his levels are.

Doctors dont seem to have a clue about the possible importance of this to an RLS patient.

All the best.

Goodfairy

The 'normal' levels for ferritin are between 17 and 150, which is ludicrous. It is a thumb-suck from every patient ever measured, meaningless statistics.

You really need to be at least 75, preferably above 100, even up to 200. You do not need to be averaged, you need optimal for your condition and your biology.

hopkinsmedicine.org/neurolo...

Go here, print it out, and take the information to your doctor. I did exactly that, in a situation like yours. After my GP read what one of the world's leading experts, Dr Christopher Earley, had to say, all evidence-based, he started me on intravenous iron immediately.

We do not store iron well, and it is hugely important to brain health. If the infusions are successful, and you get your levels up to 100, you will still need to return in six months, maybe more, to repeat the infusions. There is a puzzle about where the iron goes - non RLS humans can hold onto it, we cannot.

Jo-BC
Jo-BC in reply to Parminter

Fabulous thank you so much. I’d been thinking about what everyone has been telling me about the tablets taking ages to get my levels up so will go back to him armed with this.

Joolsg
Joolsg in reply to Parminter

Excellent advice Parminter. Everyone should print off those articles to hand over to their doctors!

A pleasure Jo-BC.

In fact I took a large, serious-looking file, stuffed with academic papers. He borrowed it!

He gave me three small iron infusions over a ten-day period, in his rooms. He did not add an antihistamine, as some do - antihistamines could bring on the nastiest RLS you have ever had - but he watched over me like a mother. The antihistamine is sometimes given per mouth or in the infusion in case of anaphylactic shock, which is very rare but possible.

If your doc wants to give you an antihistamine, choose the oral path, and slow infusions. Not the intravenous antihistamine path, and speedy iron. If you can. One way or another, you will survive!

I shall have my levels checked next week, and we will take it from there. I doubt I am where I should be - I started off from a base almost as low as yours.

The iron takes a while to get where it is needed, deep in the brain, but 80% of patients get either partial or full relief when the 'sweet spot' is hit.

Yay! I so hope I am not one of the 20%, but I have tried to prepare for the possibility.

Good luck to all of us, this affliction is life-eating.

Jo- bc

Parminter has given you excellent advice and all the literature you need to print off and show to your GP.

You’ll see a vast improvement in your RLS once your ferritin levels creep up towards 100.

Let us know how you get on.

Are you on any meds including OTC meds?

Jools

Hidden
Hidden in reply to Joolsg

Hi Jools, my ferritin level is over 100 and my RLS is severe. So it doesnt always follow that raising your ferritin level means your RLS will improve.

Joolsg
Joolsg in reply to Hidden

You’re absolutely right Elisse. For those with severe RLS ( me too) raising ferritin levels won’t stop the RLS. For those with mild or moderate RLS I think it helps.

I still have to take opioids and pregabalin every day and have ferritin above 150 & still get the creepy crawlies.

Hi all, I've just been diagnosed with SIBO, (small intestinal bacterial overgrowth). It's a condition that apparently about 70% of people with RLS have. It not only affects the gut but can have neurological symptoms as well (insomnia included). It's common to have vitamin and mineral deficiencies because the small intestine is not absorbing nutrients properly which led me to think that, at least in some cases, perhaps iron levels could be low because of this condition? In any case I've started on Xifaxan so we'll see if it has any affect on RLS.

Parminter
Parminter in reply to Twiggster

How is that diagnosed, Twiggster? And who thought of it in the first place? I have not bumped into this information before, need-to-know! Lordy-lordy, this condition gets more and more complicated, not less!

We went to an integrative physician who suggested testing for it as because along with RLS there were gastric issues too. It's a breath test you can do at home with a kit. You're given several tubes and a device to blow into it every 20 minute for a couple of hours after drinking a solution they provide. I believe they measure the methane in the breath. In any case if you look up the condition with relation to RLS it is believed there is a correlation. For some patients if you clear up the SIBO the RLS symptoms improve. You know what they say, the gut is the second brain...everything is connected. Good luck!

I was also just diagnosed with sibo and was prescribed a heavy duty antibiotic with dire side effects. I have not started it yet and I am pretty disappointed that that was my doctors answer. I hear Xifaxan works well but it's very expensive. I would love to know what your dosage is, how long you are taking it and how well it worked?? Is there a tangible Improvement in your health? In the RLS?

Hello Jo, my ferrtin is 11! I am having an iron inuston on Tuesday! That is what you need! or at least a course of oral iron! see your gp! My legs go mental if my iron gets to low! Your ferrtin is way to low & needs sorting! you will feel so much better :) See your gp asap!

Jo-BC
Jo-BC in reply to Abby14

Yeah he’s put me on iron tablets

Lovey but it’ll take ages to get the levels back up wont it. Going to send him a whole

Load of info into surgery hehehehe. Not waiting 3/4wks for a gp appt!!!

Good :) Push for an infusion

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