ferritin level

[BeachGolfer]

Can someone please remind me what the Ferritin level should be for someone with RLS? Thank you !

[SueJohnson]

100 although some feel it should be 200 or 300. Also TSAT should be between 20 and 45%.

[BeachGolfer in reply to SueJohnson]

Thank you, Sue!

[mouse-coke in reply to SueJohnson]

Sounds high. Reference?

[SueJohnson in reply to mouse-coke]

Drs Winkelman, Earley and Buchfuhrer all think the ferritin number should be above 200

Dr Buchfuhrer in response to Graham3196: "some patients need to get their ferritin levels above 200-300 in order to drive enough iron into the brain"

[mouse-coke in reply to SueJohnson]

Is that evidence or opinion? Are they recommending parenteral iron? If not what oral regimen can achieve that?

[SueJohnson in reply to mouse-coke]

They are top experts. It is probably from experience with their patients.

Either iron infusions or oral iron can achieve that.

This is my usual advice on oral iron:

If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.

Take it every other day as more is absorbed that way, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium (or magnesium rich foods), calcium (or calcium rich foods) or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.

Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

[mouse-coke in reply to SueJohnson]

Can you give me the full names of these people so I can do my own research? Thanks

[SueJohnson in reply to mouse-coke]

Mark J. Buchfuhrer He is the head of the Quality Care Center at Stanford Health Care and one of the authors of the Mayo Algorithm which is the bible on RLS. One can email him and he will answers questions and many on this forum have done so.

Dr Christopher J. Earley He is the head of the Quality Care Center at Johns Hopkins and one of the authors of the Mayo Algorithm.

John W. Winkelman he is head of the Quality Care Center at Massachusetts General Hospital and one of the authors of the Mayo Algorithm.

There are only 12 Quality Care Centers in the US.

[mouse-coke in reply to SueJohnson]

thanks

[SueJohnson in reply to mouse-coke]

Welcome to the forum. You will find lots of help, support and understanding here.

You don't say anything on your profile as to why you have joined the forum so let me guess that the gabapentin is not controlling your RLS and you are not aware of the effect of ferritin.

Beginning dose is usually 300 mg gabapentin [If you are over 65 and susceptible to falls beginning dose is 100 mg It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you.

Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime.

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason . Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it at Https://mayoclinicproceedings.org/a...

Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.

When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

By the way the doctors I mentioned in my other reply to you are all top experts in the US and elsewhere on RLS as others on the forum will also tell you.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative

[Jumpey in reply to SueJohnson]

Are you saying some doctors think ot should be over 300? Is there research?

[SueJohnson in reply to Jumpey]

Not above 300 - see my response to mouse-coke.

[Dires in reply to SueJohnson]

So what can you do if you can’t get your Ferritin to that level without raising the TSAT level?

[SueJohnson in reply to Dires]

See a hematologist.

[Dires in reply to SueJohnson]

Trying to convince my GP that Ferritin could be raised to 200-300 and getting a referral to a haematologist will be a real challenge. There also appears to be a real shortage of haematologists in this area.

My respite from RLS was very short lived but the symptoms seem to be more manageable since my Ferritin levels raised.

Are you able to guide me in the direction of the research regarding Ferritin levels which I can show my GP please?

[SueJohnson in reply to Dires]

I don't have any research showing it may need to be raised to be 200-300, only the statements from the top US doctors which I mentioned above.

[Dires in reply to SueJohnson]

Thank you Sue

[DicCarlson]

I had raging RLS - severe, in my legs and arms with little sleep. Ferritin level was 49, SAT was 20%. At the time - no clue what RLS even was. Docs said all normal! Anyway, just taking blackstrap molasses (home remedy, it contains a small amount of iron) at night immediately cut into the RLS. Eventually taking Ferrous Bisglycinate Chelate daily, then 3x/week raised my Ferritin to 105 in 3 months and took the severe RLS with it. This was years ago now and why oh why was I iron deficient then and not now? I haven't taken iron supplements in years and recent testing is still 90-100 Ferritin level. I suspect gut involvement.

bloodtestsresults.com/iron-...

[Doped in reply to DicCarlson]

That's interesting that you suspect gut involvement, I also suspect there's a gut microbiome influence as all things that effect the gut make rls worse ie antihistamines, antidepressants, statins among others, difficult to get detailed information on this topic but I think a lot more needs to be done to get to the root cause of this condition