Gentle iron long term use

[Redeyed]

Hello

Any advice on the matter would be much appreciated

Think I’ve been lucky in the sense that Gentle Iron has really been the answer to my RLS.

When I first started having symptoms I found an understanding doctor who had no knowledge of RLS really but was happy to work on a plan with me.

Thanks to the advice on this site I briefly used Gabapentin Enacarbil which helped for a while until I got my non existent ferritin levels up to 50, then for some reason that stopped working so I just focused on the Gentle Iron.

My doc advised me to take 100mg of Gentle Iron for a while and the RLS gradually disappeared.

The problem is that every time I try to cut down on the iron dosage my symptoms come back and my ferritin drops quickly. I’ve never made it to the desired 100 level yet.

So I’ve been on the Gentle Iron for almost three years and my doctor isn’t concerned about this long term usage. I am to be honest.

I have regular blood tests and that’s what keeps my doctor happy but I just read another article on the on the dangers of long term iron usage and it’s got me worrying again.

Just on a side note as I find the Gentle Iron great for my stomach and have always had soft movements with it. Just a bit fed up of black poos 😅

Still menstruating ( perimenopause has been a bit of a roller coaster too and the main cause of my RLS )so maybe I just keep going until that stops and hope that things settle??

Any advice very welcome.

Thank you

[Joolsg]

Many people on here use ferrous bisglycinate for years and years. Professor Toby Richards recently gave a talk at the AGM of RLS-UK in October. He said it was almost impossible to get iron overload from oral iron pills.

As you are getting regular blood tests and your GP isn't concerned- keep going.

You are clearly someone who responds to that hit of brain iron every night.

[Redeyed in reply to Joolsg]

It’s weird but when I stop taking the iron it takes 3/4 days before the RLS kicks in so I am not so sure if it’s an instant hit or not.

I’m going to read up on Prof. Richard’s talk and then give my anxiety a rest for the holiday season.

Thank you for taking the time to reply.

[SueJohnson]

That's great that it stops your RLS. If your TSAT on your blood test is less than 45% you should be fine. Take it every day as opposed to every other day.

[Redeyed in reply to SueJohnson]

Will keep on eye on my TSAT then. It’s not perfectly gone but I think I’ve grown used to a certain amount of annoying sensations and I can ignore them. If I could just get my ferritin to over 100 I feel I’d know more about what I’m dealing with. Thank you.

[SueJohnson]

Another thought - if you are taking vitamin C with it which helps the absorption, try taking it without the vitamin C and see if you still have no RLS. This would help lower the absorption. If that works then try doing other things one at a time that lowers the absorption:

Take it with food or coffee.

Take magnesium within 2 hours of taking iron.

Take calcium within 2 hours of taking iron.

Take antacids within 4 hours before the iron or 2 hours after.

Take your iron tablets before or after exercise

Take turmeric.

[Redeyed in reply to SueJohnson]

I used to take it with vitamin c (ester c) and then stopped which might be the reason my ferritin dropped. Never thought of that!

I’ve been taking it on its own before bed for the last few months and it didn’t bother me until I decided to cut down.

I think I’m going to start a little RLS diary next year and try and monitor it a bit better, see if I can identify any trends. Be great to have some info to pass onto the group.

Thank you for replying 💚

[Munroist]

I’ve been taking the standard recommended dose of gentle iron for several years and I’m not aware of any problems or side effects. I’ve never had any stomach or digestive issues. I managed to get my ferritin from 70 µg/L to 170 µg/L although it didn’t make a huge difference to my RLS unfortunately.

[DicCarlson]

You could try adding the probiotic LP299v - increases absorption.

Jarrow sells Ideal Bowel Support or Good Belly Brand of probiotics and drinks.

[Madlegs1]

If your concern of too much iron is based on ferritin levels, then don't be worrying until you get to over a 1000 and rising.

Apparently you are one of the lucky ones to benefit from increased iron, so continue with it.

Unless, of course you start to get aching joints or heart arythmia and any other nasties.

The Iron Disorders Institute is a good site to get advice and information on all matters iron-- toouch or too little. You can email them and they have some extremely knowledgeable bods who will advise you.

I was at 1500 ferritin at one time. Drs went ape and phlebotomised the bej*sus out of me!😂

Turns out that I was overloaded with blood from a spinal reconstruction operation ,and they didn't take account of the billion units of blood given to me during 8 hr operation.!!😂

No effects on RLS or joints.🥹

So-- carry on ,if it is working for you.

You are the world expert on "you".

🤗