Improving serum ferritin levels - Restless Legs Syn...

Restless Legs Syndrome

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Improving serum ferritin levels

Graham3196 profile image
14 Replies

My ferritrin level was measured to be 100 mcg per litre. I would like to raise it to 250 to see if this improves my intolerance to certain foods.

I am not sure what is the best way to go about this. I take 45mg of ferrous biclycinate every night.

I have gained the impression that iron biglyncinate is used to achieve a short term effect and make iron available overnight.

The doctor I saw at a clinic told me that ferrous fumerate was best for the long term increase in ferritin level.

Trouble is that I have been taking ferrous fumerate for three nights and I have had RLS for three nights. Last night was 2am to 6am and thats annoying.

Does any of our expert community know if fumerate is a recognised trigger for RLS?

Is my understanding that biglycinate is only for a short term effect correct or would I be more likely to get a long term increase in ferritin by taking say 90mg of ferrous biglycinate?

Thanks

Graham

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Madlegs1 profile image
Madlegs1

Raising iron levels- both hgb and Ferritin- involves meat sources.

Sea foods , liver , vit B12 as methylcobalamin - 1200mmg. And vit c through rhe day to aid absorption.

Avoid coffee and other things , I've forgotten about.

Iron Disorders Institute has a good list of methods to inrease iron.

Good luck.

Be careful messing with iron-- it can kill or maim you.

I dont think raising your ferritin level any higher would make any difference to food intolerance's. Certainly not something i have heard of. I havent heard of any iron pills making RLS worse. Did you hear or read somewhere that having a high ferritin level would work for food intolerance's..?

Graham3196 profile image
Graham3196 in reply to

Thanks Elisse

No I haven't seen anything connecting food intolerance to ferritin level but my RLS is related to food intolerance. I argue that since my ferritin level is just marginal (100) I might be able to improve my resistance to RLS by increasing Ferritin Hence if resistance to RLS is improved then my food intolerance might decrease and allow me to eat a wider range of foods. Just a hypothesis waiting to be shot down by an experimental result.

My sudden increase in RLS is a surprise to me and it is coincidental with starting the iron fumerate. I have realised since that I have also changed brands on the Brie that I have been eating and that was three days ago. It is possible that the new brand (which is much cheaper) has a higher lactose content. Normally Brie is safe in the quantities I eat.

I think I will cut both the ferrous fumate and the Brie out and see if things return to normal in the next few days.

Cheers

Graham

in reply to Graham3196

Right ok. good luck maybe that will work, could well be the Brie. Are you Lactose intolerant...generally with all food then. Not nice to cope with looking at all foods you buy. Of course you could always email Dr. B and see if agrees with your theory. rlshelp.org

in reply to

I am wondering if there is anything in the iron pills apart from iron lol that you might be intolerant to. ?

in reply to

hi Graham3196. Elisse's question is very pertinent; and I had to jump in. So many good medicines become problematic due to the fillers (ingredients)used to form the pill. Worth looking into. I'd call the pharmaceutical that makes a particular pill for filler info.

in reply to Graham3196

The RLS might be tied to the change of iron. Originally I bought I ferrous sulfate on my doctor's recommendation. Not because my iron was low but because I wanted to try it for the RLS. Then I read on here about the bisglycinate and bought that too and just started and continued with that since it worked so well. Last week I ran out and just took the sulfate with vitamin c like the doctor recommended. Didn't seem to help the RLS much at all. Couldn't get to the drug store fast enough to refill the biglycinate.

LotteM profile image
LotteM

Hi Graham. Ferritin of 100 is not "marginal". From the top of my head, the paper(s) that show a relation between iron and rls find an association between the two when ferritin is lower than about 75. There is rarely an exact crucial level. And the same papers show that when low ferritin levels get increased (one way or another, here the standard is ferro fumerate too), rls symptoms for many people - but certainly not all - get reduced. How far reduced is also an individual story. To be on the save side, the suggestion is to get your ferritin at least above 75, and preferably above 100.

In sum, I agree with Elisse that raising your ferritin will probably not make any difference. And I have taken ferrofumerate for almost a year (every other night) and it did nothing obvious to my rls. Meanwhile my ferritin levels have increased, though. Takes a while...

LoisTonya profile image
LoisTonya

Hi Graham

Had an enlightening day at thr rls agm yesterday. Kirsty, a consultant neurologist said she does one ferritin test. If it is above 75 she doesn't consider it an issue. She also said that small amounts of alcohol can be beneficial. Having been teatotal virtually all my life, I had a sherry last night. Initially my plmd got worse then I had the best night's sleep I've had in years.

Several things seem to go against the received wisdom on this forum.

Where were you, Joolsg?

Graham3196 profile image
Graham3196 in reply to LoisTonya

I have read so much in this forum about hopeless medical experts that I am thoroughly dis enchanted with most of their guesses. Their first response seems to be to prescribe drugs that have serious side effects. Instead they should start with things such as Ferritin, ferritin saturation and diet.

I have seen it stated that the minimum ferritin level for RLS people is 100 but safe max is 250. Hence I can't help wondering if some people might be better with a ferritin concentration toward the top end of the scale so I'll try and drive it up there and see what happens in my sample of one. Perhaps it will work well for me.

I have forgotten all about the ferritin saturation level which I heard about a long time ago. I just checked the lab report and it doesn't mention the ferritin saturation. I suppose that has to be specifically requested. I will ask my GP why this was not measured and reported.

Alcohol Beer and whiskey seem to upset me but I can take a single glass of rum and coke. Is it possible that the wheat survives the fermentation and distillation process? Rum is sugar based I think.

Cheers

Graham

Kaarina profile image
KaarinaAdministrator in reply to LoisTonya

It was great meeting you at the AGM yesterday, LoisTonya, along with a couple of other forum members. I was sorry too, not to see you, Joolsg and hope you are ok.

in reply to LoisTonya

Yes Joolsg, where were you??😁

I enjoyed meeting you, LoisTonya!

DicCarlson profile image
DicCarlson

There are plenty of connections with Gluten Intolerance and iron deficiency. I wish there was a more direct way to measure Ferritin. My RLS is creeping back (haven't taken any iron in many months). I guess I need to order another round of blood tests. I would agree that Ferritin of 100 is fine - especially if you are male. Also look at % saturation which should be above 20%. Sometimes you can take all the iron you want and it just isn't absorbed. This patch might get around that... patchmd.com/Iron-Plus-Topic...

Retren profile image
Retren

Graham we are all different what works for one does not necessarily work for another .I read someone had benefit from taking alcohol but as a child I was given sips of whatever the adults had so as my mama said I would not get a taste for it I did,not but distinctly remember getting a tight feeling all over which was RLS in retrospect .

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