update

[6236]

well after getting my labs back from Dr. Cooper I have to say that I am a little disappointed in the fact that he said my feretin levels were good at 51. I have understood from you guys that it needs to be at least 100 so him saying that 51 is good disappoints me. That being said I received my results via my patient portal so I have not spoken with Dr. Cooper about this. The results did show my B12 levels were lower than normal so I will begin taking a B12 supplement. I go back the 22nd and will discuss all of this with him also I became a member of the RLS foundation and they sent me a lot of information that I will pass on to Dr. Cooper who I hope will be receptive. I will update after I go back on the 22nd.

[ChrisColumbus]

"On the basis of a consensus of RLS experts, it is recommended that all RLS patients with serum ferritin concentration of 75 μg/L (to convert to pmol/L, multiply by 2.247) or less and transferrin saturation below 45% should receive a trial of oral iron therapy......

A common oral iron regimen is 325 mg of ferrous sulfate (65 mg elemental iron) in combination with 100 to 200 mg of vitamin C with each dose to enhance absorption once daily or once every second day. More frequent administration of iron may reduce absorption."

From the Mayo Algorithm - already shared - which also talks about needing to get above 100 and about infusions.

mayoclinicproceedings.org/a...

And experience of sufferers has shown that getting to 200 or even 300 can be necessary. It doesn't help everyone, but it helps a lot!

Good luck!!

[SueJohnson]

That is disappointing. He should know better. Also give him a copy of the Mayo Clinic Updated Algorithm on RLS as he obviously isn't familiar with it or he woul d not have said your results are fine. What was your transferrin percentage (TSAT)?

To elaborate on what Chris said. 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. Take it every other day, 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, calcium 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 tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. 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.

[DicCarlson]

Yeah - that's painfully low. Mine was 49, raging severe RLS - docs said normal, nothing to see here! I happened on the Johns Hopkins Neurology Dept website and a telling quote that sufferers can benefit from supplementation with ferritin levels under 50! Iron supplements literally stopped RLS in it's tracks! Went to 105 Ferritin in 3 months supplementing with ferrous bisglycinate chelate.

[Munroist]

You can potentially raise your ferritin through normal supplements. Mine was 70µg/L to start and by taking the twice the recommended dose of gentle iron (iron bisglycinate) every other night with some vitamin C I got it up to 170µg/L. Unfortunately it hasn't cured the RLS but I felt it had improved with me waking fewer times each night and the twitching being less violent.