Low iron levels

[Jeryatric]

Ref. my posts last month, the augmentation has now settled down and I’m intending to start

weaning off pramipexole. However, a new iron levels check has shown my serum ferritin level

to be very low (12). I’m now taking iron sulphide, 3 x 200mg tabs / day - hope that will build

levels up!

Question: Is it better to wait until my iron levels have improved before starting the

weaning off process- or would it make no difference?

[Joolsg]

You should demand an iron infusion. Your serum ferritin is extremely low. New NICE guidelines require treatment when serum ferritin is below 50ug. And that's for the general population.

Or you could pay for a private iron infusion.

With levels that low- start taking the iron now. But not 3 times a day. New NICE guidelines recommend once a day.

If the iron sulphide causes side effects ( stomach issues) you can switch to ferrous bisglycinate (gentle iron).

There's a printable page on iron therapy for RLS on RLS-UK website under 'useful resources'.

Raising serum ferritin above 200ųg/L can help to reduce augmentation symptoms, but it doesn't reduce withdrawal symptoms.

RLS-UK website has the withdrawal schedule under 'Useful resources'.

It explains what you can expect during withdrawal.

Severe RLS and violent leg jerks and no sleep are common. Depression and anxiety are also common.

Most people will need a low dose opioid to take for 4 or 5 nights after each dose reduction.

So if and when you start to reduce Pramipexole- ask your GP for 30mg codeine OR 50mg tramadol OR 10mg oxycodone pills.

And start pregabalin or gabapentin at night only, around 4 weeks before the last dose of Pramipexole.

Good luck.

[SueJohnson]

Definitely try to get an iron infusion but in the meanwhile you can take iron tablets but as Joolsg said not 3 times a day.

This is my usual advice : Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption.

Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

If your iron sulphide doesn't bother you, one tablet would be fine.

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 turmeric 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 or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

And no reason to delay weaning off pramipexole.

[Jeryatric in reply to SueJohnson]

Thanks, Jouls and Sue.

First, I must correct a “senior moment”! I’m taking Ferrous Sulphate, not iron sulphide.

I asked my GP about an infusion but he felt that it was not advisable considering my age and heart condition.

Re. Iron tabs - 3 x per day was prescribed by my GP. Don’t know if he was spreading it out in view of heart condition. Could you explain the reasoning behind taking only once once a day? My tabs are 200 mg so taking 3 at once every other day would be about right?

Jouls - I looked for NICE guidance on this but couldn’t find anything. Can you advise. how to find?

Thanks again for all the good advice.

[SueJohnson in reply to Jeryatric]

When you take iron hepcidin is released which prevents you from absorbing any more iron for the next 24 hours.

Yes three of your iron tablets would be right.