RLS and iron

[fritzb43]

HOW TO HAVE YOUR IRON STATUS CHECKED

IRON INFORMATION FOR RLS PATIENTS

As we know, low iron in the brain is one of the two major causes of Restless Leg Syndrome. (The other is a dopamine imbalance in the brain. In any event, RLS occurs in the brain - it is manifested in the limbs.)

With regard to iron, there is really only one correct way to test a patient's four iron levels. This information is from The Johns Hopkins University & Medical Center in Maryland, USA.

Listed below are the four iron parameters and the recommended levels for RLS patients.

Serum (total) iron: greater than 60 ug/dL

Per cent iron saturation: 16% or greater

Total Iron Binding Capacity (TIBC): less than 400 ug/dL

Serum ferritin: at least 100 ng/ml (some patients may need much higher, even 200-300)

NOTES:

1. Blood must be drawn from a patient for these 4 tests after a morning fast. The reason for this is that the serum iron varies widely with food. This number is used to calculate the per cent iron saturation. Testing without fasting may result in two of the four results being inaccurate.

2. All four tests must be within the given ranges for RLS patients per the Johns Hopkins guidelines. If even ONE test is out of limits the iron status may be severely low enough that the symptoms will continue.

3. Oral iron may provide some relief from symptoms, but it must be taken on an empty stomach and most iron "supplements" do not contain enough iron to move the numbers. The standard oral iron is ferrous sulfate 325 mg, taken with vitamin C 500 mg to aid absorption. However, many people will experience GI issues such as constipation. But it is a starting point and it often works somewhat. (Drug store iron supplements may provide temporary relief, but they do not contain enough iron for RLS patients. Also, make sure you tell your doctor that you are self-medicating with iron - s/he needs to know this.)

4. The preferred treatment for low iron status in RLS patients is intravenous (IV) iron. It is completely safe when done at an infusion center by competent staff and it is indicated for anemic patients often.

5. Almost no primary care physicians (family doctors or 'consultants') have any idea or knowledge about the RLS-iron connection. You may need to be prepared for pushback or even total denial about this. If this occurs, ask for a referral to a knowledgeable RLS physician.

6. Feel free to ask about iron, but your best source is always (hopefully) your doctor.

[SueJohnson]

Actually iron saturation (transferrin saturation, TSAT) should be over 20%. and TIBC over 380 may indicate anemia. And another cause of RLS is genetic.