Ferratin Level BS!

[Diz17]

I just had my yearly check up and got all my blood work back and the Dr. told my my ferritin is over 200 and I still have restless legs every night. She actually told me she is concerned that my ferritin is too high as the normal level is 75-200 and I am 221. I know there is talk that low ferritin causes restless leg syndrome but how can this be that I have had RLS for 10 years and my ferritin has never been below 125? I know the rumors are that our brains aren't getting enough iron and that is the problem and there is no way to know how much iron are brains are getting. Until we can measure the level of iron in our brains, I am not buying that one of the triggers for RLS is low iron or ferritin levels.

[Hidden]

Obviously that’s not the only factor here. To my knowledge, the exact cause of RLS is unknown. I think it’s common to have low ferritin levels, but not the cause. I’m sorry that you didn’t hear what you wanted to hear. Hopefully, you will find out how to treat your RLS satisfactorily. I’m wishing you peace from the movement!

[DicCarlson]

You are right is stating that it is iron dysregulation in the brain. So, you can have a lot in your bloodstream but somehow it isn't getting into the brain. Only 15% or so of RLSers respond to iron therapy. From Johns Hopkins "In the last 20 years, there has been a substantial amount of research into understanding the cause of RLS. From that research, there appears to be three factors which are pertinent to the disease: brain concentrations of iron, brain dopamine concentrations, and genes." hopkinsmedicine.org/neurolo...

It would be interesting if someone with a high Ferritin level did some supplementation with Ferrous Bisglycinate Chelate. This supplement is a "designer supplement" that can readily cross the blood/brain barrier, perhaps impacting RLS. I would totally check with your doctor before trying it - but the dosage is low 18-25mg. This supplement totally eliminated the severe RLS for me (low ferritin BTW) in like a week!

[Mona23 in reply to DicCarlson]

I’m happy for you that the FBC is working! I’m using Ferrous Bisglycinate Chelate, but have only been on it for a month. I’ll have my ferritin level checked again in November and will let the forum know if it’s up at all. Could you tell me what dose you’re taking, and do you take it every day or every other day? And what is your ferritin level now? Thanks!

[DicCarlson in reply to Mona23]

I was originally flummoxed by what to do with severe RLS and NO SLEEP - lots of pacing about. I originally read to try Blackstrap Molasses (it has iron in it). It totally cut into the RLS! Then I discovered Ferrous Bisglycinate, and took it daily on an empty stomach, midmorning (28 mg). Daily for about 2 months, then every other day, then once a week. Original level was 49 (of course Docs said OK). I increased it to 105. Last I checked it was 95. So, I wonder how and why was I iron deficient? There's more going on here. I have only mild RLS on occasion now, but protracted insomnia remains.

[Mona23 in reply to DicCarlson]

You may not have been iron deficient - the crucial thing seems to be, does the body of someone with RLS process/metabolize ferritin effectively? That’s why more iron that can cross the blood/brain barrier might be helpful. Sleep issues continue for many of us because we learned - or at least, I did - so many bad sleep habits due to having RLS, and it’s hard to undo decades of that. It takes a long time to re-train our bodies to sleep well. I practice sleep hygiene habits (for about a year now) and it’s still a slow change. But 5-7 hours of sleep most nights is miraculous for me! In my case so far, it’s due to CBD/THC. And sleeping better has minimized my symptoms.

[DicCarlson in reply to Mona23]

I was iron deficient all right. I remember the night I first tried the Molasses - instant positive reaction. I think I bought 3 bottles, was taking it 3 times a day 'till I discovered the Iron supplement. The question - Why was I and why not now, many months later?

[rls_optimist in reply to DicCarlson]

Can you please give a reference for that statement that only 15% of RLS sufferers benefit from iron therapy? And for the claim that ferrous bisglyconate chelate can more readily cross the blood-brain barrier?

Meanwhile, I'm very happy to hear that you have had such success with that form of iron! Congratulations!

[DicCarlson in reply to rls_optimist]

I probably misstated that 15% figure - from the Johns Hopkins link above... "Despite this strong association between serum iron insufficiency and RLS, only about 15% of the RLS clinical population appears to have peripheral iron deficiency (serum ferritin < 50 mcg/l). To account for this, Professor Nordlander in proposing his “iron deficiency” hypothesis of RLS stated “It is possible…that there can exist an iron deficiency in the tissues in spite of normal serum iron.”

Ferrous Bisglycinate Chelate is manufactured by Albion. I cannot find any references that it readily crosses the blood-brain barrier. There are however many references that claim all these chelates are more bio-available, more absorbable into the blood stream through the intestine wall. albionferrochel.com/

[Mona23]

What most of us have discovered is that there’s no “one size fits all” remedy for RLS. For many people getting their ferritin levels up made a world of difference; I’m still trying to get mine above 75, so I don’t yet know if I’ll be helped by it or not. Hang in their - what you seem to have discovered is your ferritin level either needs to be WAY higher to eliminate your symptoms, or your RLS symptoms aren’t influenced by ferritin. Your dr is right to be concerned about your ferritin level, but blood tests can be done to be sure it’s not too hard on your body. Ask for them, because if everything else is fine (kidneys, pancreas, liver are all processing well), maybe you can go to a higher level safely. If they’re NOT working well, you need to know that, anyway. Good luck, DIZ17!

[rls_optimist]

I'm sorry to hear that you're not getting any benefit from higher ferritin levels. As others here have said, it could be either that you will not be among those who benefit, or that your ferritin level needs to go still higher.

Your doctor is wrong about maximum levels. The report I got back from my recent lab test is that the "Standard Range" for ferritin is 17.9 - 464.0. Some RLS experts are now saying that the ferritin level may need to get up to at least 300 before an improvement is seen. So don't give up yet. Good luck!

[marsha2306]

My doc had me go for an iron infusion because my ferritin was 70. It went up to 600+ and a year later 400+ and now 200+. And, ta da, I still have RLS every evening and overnight.

[Diz17]

It is so frustrating because I feel like despite all of this talk on this message board and any other one for that matter we are still basically at square one for dealing with and managing this disease. Yeah there are a few things that work for 24 hours but with horrible side effects. We try and just cope with it and fight our way through it but then we don't sleep which throws EVERYTHING out of WHACK! Then we start to lose cognitive function and really don't know if we are messed up because we are tired or are we dealing with side effects???? UGH! Enough already with all of it!!! I am so sick and tired of this damn disease running my life!