Ferritin results enquiry

[SwimLyn]

Just got my latest ferritin/ trans ferritin saturation results as recommended by this forum as a major factor in RL- they are 239 & 40% respectively & although my specialist says there OK to good I trust the group more to confirm I don't need to supplement iron .Thanks so much

[SueJohnson]

There're fine.

[Munroist Administrator]

They are pretty good for RLS, right at the top end. Have you noticed any benefits for your RLS as the iron has increased? Depending on your reasons for low iron in the first place you may need some degree of supplements to maintain that level.

[ChrisColumbus]

Has this helped your RLS symptoms? If not, or not much, it could be that even the reduced dose of atorvastatin - or another medication - is still triggering the symptoms. I didn't get rid of RLS symptoms until I was entirely off statins and other trigger medications, and had also reduced dietary triggers.

[SwimLyn in reply to ChrisColumbus]

Hi Chris-I've never took iron supplements so the ferritin levels have been reached naturally . I have reduced statins from 40mg to 20mg over the last 3 months but not really found any difference in the 'behaviour' of my RL. I have had to increase Pregabalin now to 150mg a night but have found it takes me a long time to fall asleep before it kicks in to a very heavy sleep with the resulting hangover effect!! Not complaining just saying.............

[ChrisColumbus in reply to SwimLyn]

This section on statins is taken from the RLS-UK medications to avoid section:

"Statins: Many people report that statins worsen their RLS symptoms e.g. Atorvastatin or Rosuvastatin.

Alternatives are available although some may be less effective and should always be discussed with your doctor.

Ezetimibe (Zetia) works differently from statins in that it inhibits the intestinal absorption of cholesterol and is recommended in the UK if a statin is “inappropriate or not tolerated”. It generally works more slowly than a statin, so may not be suitable for those with very high LDL.

Other alternatives include Fenofibrate (Triglide in the US, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins.

Bempedoic acid works by reducing the production of cholesterol in the liver and Nustendi (Nexlizet in the US) combines ezetimibe with bempedoic acid for a cholesterol lowering drug that is again not a statin.

A potentially more difficult way to reduce cholesterol is to go vegan or make significant changes to your diet, some of which may also have a direct bearing on your RLS symptoms as described in Non-Medical Treatments"

After a TIA I was on statins for months with resultant bad RLS, joint and muscle pains, tiredness and lethargy.

With the agreement of a hospital consultant and my GP I was moved on to ezetimibe which didn't trigger my RLS, pains or lethargy etc. However my bowel is sensitive after radiotherapy, so again with my GPs agreement I've had to come off that too. I'm currently waiting for a lipids clinic referral to see which alternative they recommend (if anything).

Not every RLS sufferer finds that they can't tolerate statins, but it's fairly common.

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