Neurologist/Iron infusion

[Blairy]

Hi I am form NZ and suffer RLS. I am living in Edinburgh and need some help yet my GP is pretty useless. I need to re asses my medication and look to get iron infusion. I have lots of knowledge but need a neurologist that know RLS and is willing to support Iron infusion. happy to go online any suggestions?

[SueJohnson]

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

I don't have any names in Edinburgh but there is Dr Colin 0'Leary neurologist in Glasgow that scottie99 saw. You can message him to find out about his experience. Let us know what you find out.

I have the names of two doctors you definitely DO NOT want to see:Dr Kevin Fernando near Edinburgh and Dr David P Breen in Glasgow

I also have 2 places you can get private iron infusions if you are willing to pay:

Https://taysidecompletehealth.com/i... in Dundee

Https://glasgowprivateclinic.co.uk/wp-content/uploads/2024/10/GPC_IronInfusions_Doc2.pdf

What medicine do you take for your RLS? Please tell me it is NOT mirapex (pramipexole), ropinirole (requip) nor the Neupro (rotigotine) patch.

Have you had your ferritin tested? If so what was it?

[Blairy in reply to SueJohnson]

Hi Sue, Thanks a million!400 Gabapentin and .5mg ropinirole. I have come off the ropinirole before, with no increased symptoms and smoothly. I was on 1mg then. Went back on a mix after a hellish time with pregab then high dose of Gab for 6 month, codeine worked well but the indigestion caused very problamatic. tramadol works but the headaches and dizzness are not great. So started coming off ropinirole again due to aug but no rebound presently, actually relief of symptoms. My IRON: 18 umol/L Ferritin: 89 ug/L so have never tried Iron treatment before. My Doctors in NZ never suggested it.

[SueJohnson in reply to Blairy]

As you are probably aware you want your ferritin to be above 100 as that helps 60% of those with RLS. While you wait for an iron infusion 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. 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.

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 to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you get an iron infusion or after 3 months if you continue with just taking iron.

You have certainly tried everything. How much was the high dose of gabapentin? Did you take it in divided doses of not more than 600 mg 2 hours apart? Did it help at all?

You have been very lucky in coming off ropinirole as most do have bad withdrawal symptoms. My usual advice is to reduce by 25 mg every 2 weeks.

It sounds like you may need a long acting opioid. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often. And unfortunately they are not without side effects.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, 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, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

[Madlegs1 in reply to SueJohnson]

Edinburgh in New Zealand.

Very confusing!😝😭💚

[Blairy in reply to Madlegs1]

From New Zealand, moved to Edinburgh last year!

[Madlegs1]

My mistake. Apologies to Sue.

Dunedin is the Edinburgh of South Island .

[SueJohnson in reply to Madlegs1]

Huh?

[Madlegs1 in reply to SueJohnson]

Just a mixup of countries. My bad!💚

[Elisse3 in reply to Madlegs1]

Ha ha Madlegs one drink to many ?

[Madlegs1 in reply to Elisse3]

😝💚