Iron ferritin levels: Hello, My... - Restless Legs Syn...

Restless Legs Syndrome

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Iron ferritin levels

Clarina123 profile image
20 Replies

Hello,

My ferritin level is 35 so my doctor has given me ferrous sulphate tablets. 200 mg.

take one tablet twice a day. I have been reading on here that ferrous bicglycinate has better results. Would you advise me to continue with the ferrous sulphate, or change to ferrous bicglycinate.

Thanks

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Clarina123
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Heatherlss profile image
Heatherlss

Since your doctor is open to discussion regarding Ferretin levels, I would encourage you to talk to him about IV Iron. It increases the ferretin levels much more quickly than ferrous bisglycinate or ferrous sulphate do.

Clarina123 profile image
Clarina123 in reply to Heatherlss

Thanks for your speedy reply. Much appreciated.

in reply to Clarina123

Sorry, I sent you the wrong link.

This is the right one

sciencedirect.com/science/a...

Taking ferrous sulphate twice a day may cause quite a bit of gastrointestinal upset. In addition taking it that way will actually make it more to difficult to absorb. Less than 2%.

Ferrous bysglycinate is gentler and is less likely to cause upset.

The problem with oral iron supplements is that the amount of iron that can be absorbed is very limited. There is a biological mechanism which restricts it to prevent iron overload.

When you take iron a hormone called hepcidin is released which prevents any more iron being absorbed. This remains active for up to 24 hours.

No point then taking iron twice a day. In fact no point taking it every day.

Iron then, is best taken every other day, 30 mins before or 2 hours after eating along with a glass of orange or a vit C tablet.

You can take a double dose, but take them at the same time.

As your ferritin is below 75 then oral iron can work. It may take months, but it is possible to raise it to at least 75 or even 100.

Unfortunately, if you need to get it higher you will need an IV infusion.

See this article

sciencedirect.com

Clarina123 profile image
Clarina123 in reply to

Thanks. That's what I needed to know. Much appreciated.

WideBody profile image
WideBody in reply to

I am pretty sure I know what your link is supposed to be. But it is not working for me.

in reply to WideBody

Sorry, wrong link

This is it

sciencedirect.com/science/a...

WideBody profile image
WideBody in reply to

Clarina123 This is a much better paper than the one I listed. If you look at section 8.2, I think that is the part you want to share with your Doctor.

Jumpey profile image
Jumpey

I raised mine from 22 to around 90 taking ferrous sulphate once a day.It took around 3 months. It caused constipation but I stuck with it.At that time I hadn't heard of biglycinate.I take the latter now daily to maintain my ferritin level.

Clarina123 profile image
Clarina123 in reply to Jumpey

Thankyou for your reply. Sounds like it's worth me keeping taking the tablets! Much appreciated.

Jumpey profile image
Jumpey in reply to Clarina123

You are welcome.Good luck.x

Joolsg profile image
Joolsg in reply to Clarina123

I raised my levels from 45 to 200 by using ferrous bisglycinate EVERY OTHER NIGHT. If you take every day or more than once a day, Hepcedin blocks absorption in the brain.

I then had an IV iron infusion of Injectafer ( in London) & levels went to 786.

However, sadly didn’t help my RLS but 60% will see a dramatic improvement in their RLS, 20% a moderate improvement but 20% have no improvement.

Clarina123 profile image
Clarina123 in reply to Joolsg

Thank you for your reply. So sorry it didn't work for you.

Joolsg profile image
Joolsg in reply to Clarina123

At least I was given the opportunity to try it. I was convinced it would work because I first developed RLS during second pregnancy when I was anaemic & had a serious kidney infection. Pretty sure it will work for people who haven’t had serious augmentation & withdrawal from dopamine agonists. Dr. Buchfuhrer’s theory is that Certain people suffer permanent damage to dopamine receptors so no matter how much iron gets through to the brain, it can’t be used by the damaged dopamine receptors.

That’s why it’s so important for doctors to raise ferritin as the very first step. But most doctors have absolutely no idea.

The odds are very much in your favour- really hope it works.

DicCarlson profile image
DicCarlson

Iron is a key component to many RLS conditions. I had raging severe RLS with a Ferritin level of 49. It was 24/7 and in my arms - no sleep at all! Literally within a week of supplementing with Ferrous Bisglycinate Chelate (18mg) the severe RLS gradually went away (insomnia remained). My Ferritin went to 105 within 3 months. I now take it only occasionally whenever I feel RLS reappearing.

Clarina123 profile image
Clarina123 in reply to DicCarlson

Thankyou, its Good to hear! Much appreciated.

WideBody profile image
WideBody

I used to only use only Liquid Ferrous Sulfate. I used it for several years. I tried several iron pills before and none worked. The doctor prescribed the liquid. It worked, but there was some constipation at first.

I do think my body got used to the iron. In that the constipation has not come back.

I am doing a test right now with Ferrous Bisglycinate Chelate 27mg * 3 with some vitamin C, on an empty stomach at night before bed. It seems to be working, but the my blood test is in February, to early to tell.

Now for the IV iron. If you did a full morning fasted iron panel. The Tranferrin Saturation Percentage of less than 20% indicates anemia and low iron stores. If your TSP is below 20% or Ferritin below 30 an IV is recommended. My ferritin was 30, an iron infusion saved my life, personally I would push hard for this. I do see the benefits of oral supplements, the amount of time (for me) would have been too long. I tried supplementing with iron for over a year prior.

BTW, I just found this AWESOME paper, I want to share with you and everyone. Nothing gets my heart racing faster than a title like.

"Willis-Ekbom Disease Foundation Revised Consensus Statement on the Management of Restless Legs Syndrome"

mayoclinicproceedings.org/a...

And from Mayo Clinic! Trust me, read it like a love letter. Print it out. Give it to your Doctor and discuss it with him. Good luck

Joolsg profile image
Joolsg in reply to WideBody

This is from 2013 so be aware that it’s already out of date. The Mayo Clinic is working on a new algorithm as we write. Dr Buchfuhrer comments that it should be available soon. Fingers crossed 🤞

WideBody profile image
WideBody in reply to Joolsg

I was aware, I spent some time looking for a newer version. If you find one, please let us know. Manerva's paper is better, especially when dealing with iron.

Clarina123 profile image
Clarina123 in reply to WideBody

Thankyou, very interesting.

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