Ferritin : I have read on here that... - Restless Legs Syn...

Restless Legs Syndrome

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Ferritin

Smiffyliz profile image
11 Replies

I have read on here that ferritin level should be over 100. The neurologist I saw said 50 but to get mine up to that he prescribed huge doses of iron tablets which my poor system could just not tolerate. I have now got it to 50 but in a gentler way. My question is how do you get it up as high as 100. I have ibs and Barrett’s oesophagus so can’t tolerate huge doses of tablets

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Smiffyliz profile image
Smiffyliz
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11 Replies
Madlegs1 profile image
Madlegs1

Iron infusions are something that ppl here have had- hopefully one of them will come on to relate their experience.

The Iron Disorders Institute site deals with all aspects of iron- they have a good email forum, which would give you advice.

I take vit B12 as methylcobalamin (1200 per day) oral spray to raise HGB after phlebotomy, but not sure if it raises ferritin significantly.

All the best.

Parminter profile image
Parminter

Once you have reached 50 with tablets you will struggle to get levels higher in the same way. It will slow down to a trickle. Stuffing yourself full of rust will just make you ill.

I would ask for an IV iron infusion using ferric carboxymaltose. That will get levels up fast, after which you can attempt to maintain the levels with a kinder version of iron such as Ferric Bisglycinate, which does not constipate, does not make one nauseous, and which you can take with meals. Why doctors do not use it I cannot imagine.

Alternatively, you can keep levels up with Floradix Iron Supplement. That is plant-based, and the kindest of all.

Smiffyliz profile image
Smiffyliz in reply to Parminter

My gp suggested floradix but I have been using ferroglobin which I got a deal on in Boots. Also tried spatone. I think chances of getting infusion on nhs very slim. Last night for some reason they didn’t bother me. Had son and partner here and we were in garden till quite late so maybe my dopamine levels were raised naturally.

DicCarlson profile image
DicCarlson

PatchMD is a transdermal delivery - bypasses the digestion system entirely. patchmd.com/Iron-Plus-Topic...

Smiffyliz profile image
Smiffyliz in reply to DicCarlson

Sadly don’t have it in uk. Thought website was only uk based

DicCarlson profile image
DicCarlson in reply to Smiffyliz

amazon.co.uk/PatchMD-Iron-P...

Smiffyliz profile image
Smiffyliz in reply to DicCarlson

Oh great thanks

marsha2306 profile image
marsha2306 in reply to DicCarlson

Also Vitron C is a combo iron & Vitamin C that is easier on the stomach.

marsha2306 profile image
marsha2306

Mine was 70 and it’s generally known that people who have RLS need to be over 100. I had an iron infusion to get mine over 100. It ended up being 615, then dropped to 400 within a year. Don’t know what it is now. I’m not due to have it checked til October.

Junebrad profile image
Junebrad

My Doctor has just cut my iron to a quarter of what I was taking. when I asked why he said I could poison myself if I have to much so how much is to much? Can I ask for my reading from when I had my blood taken, he said my blood count was right so again what is right? Sorry to be asking so many things but whats the difference between Ferrous Fumerate and Ferrous Sulfate. Thanks for any replys I get Junebrad

Joolsg profile image
Joolsg in reply to Junebrad

It’s best to make a new post June- this one is 2yrs old.

Get your latest blood test results and look at serum ferritin and serum iron. Serum ferritin needs to be above 100.

US experts report that keeping serum ferritin at or above 350 produces best results.

If your levels are under these levels you can buy ferrous bisglycinate from Holland & Barrett or online and take 50mg only once EVERY OTHER NIGHT. Levels rise more quickly than if you take daily supplements.

Link attached.

practiceupdate.com/content/...

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