Hi I'm due to see my gp tomorrow. I have been to the sleep clinic at guys, london and they have agreed that i have severe rls. I am currently taking gabapentin 300mg x2 at 6pm, 300mg at 7pm and 200mg at around 10pm. I also take 20mg x2 ferrous bisglycinate every other day with vit c.
My rls is controlled in the evening but not very well at night.
The sleep clinic asked for my iron levels to be done;
Serum ferritin 145
Serum iron 117
Serum transferrin 2.4
Serum transferrin % saturation 19
They also suggested changing my gabapentin to 120mg nocte (in effect a 300mg decrease!), which i notice they have already done without discussion with myself.
They suggested, if ferritin at adequate level and gab 120mg not effective, either rotigone or pregablin or targinact.
I am a bit worried now about my appt tomorrow. If anyone can advise on my iron levels, I would be grateful.
I am obviously not going to agree to rotigone (have gad ropinirole in past)
It'll be a good test to see if NICE guidelines filtering down
Any thoughts would be welcome
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Woolfy1
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Your transferrin saturation is below the minimum of 20% so I would double the amount of iron you are taking. You can ask for an iron infusion but there is a probably 100% chance they will refuse it.
Why do you list haemochromatosis on your profile since you obviously don't have it?
According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)." Print out this and show it to your doctor. Tell him you need it. Https://mayoclinicproceedings.org/a...
You know the NICE guidelines won't have filtered down as they didn't announce it.
Also take Lactobacillus plantarum 299v with your iron as it also helps its absorption.
By the way I don't think I ever gave you the following:
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 without progesterone and sometimes even with it, 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.
Your transferrin saturation is below the lower limit of 20%. so I would double the iron you are taking.
You are taking your gabapentin wrong. Since you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you later need more than 1200 mg, take the extra 6 hours before bedtime.
According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium nor antacids within 2 hours for the same reason.
Thanks for your reply. I wrote 200mg gabapentin for the 10pm but meant 600mg. I don't know about haemochromatosis, I don't have it and I can't actually see it on my profile.
I have read your advice re triggers for rls and some things that have helped. This has been really helpful for me over the years.
It is listed above under related tags - often they are the same as on one's profile and I have always assumed incorrectly they were the same. Now I know better. My mistake!
So take your 600 mg dose you take at 6 instead at 8 and the 300 dose at 6.
That is unconscionable that they reduced your dose without discussing it with you!
I forgot to add on the iron take it 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 your transferrin saturation is below 20, you may need an iron infusion.
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.
Just to follow on from my GP phone appointment. Mixture of results!
She said iron levels were fine as my serum ferritin was 145. She also thought my transferin %saturation was ok at 19%.
She , did however, agree to do more blood tests next week.
When i stated that I was still getting RLS which woke me 2 to 3 times a night, she said that I could be prescribed a DA. She did not seem to know that I had already had them or the difficulties with them.
We agreed finally for me to swap to pregablin and see if that worked better for me than gabapentin. She also prescribed codeine to help with the tapering.
So, a mixed bag, but so tiring to always feel you are battling with them.
Just wanted to update and share my experience
This forum is great to prep for any gp appointment. Thank you all again
You don't need to taper from gabapentin if that is what was meant. You can switch directly. Divide the gabapentin amount by 6 to get the pregabalin dose which would be 250 mg pregabalin in your case. You don't need to divide the doses but can take it all at one time 1 to 2 hours before bedtime.
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Iron profile 
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Good iron levels for the four blood tests relevant to RLS?
