Hi everyone, thanks so much for the advice so far with respect to iron. I've been using iron at bedtime for the past 5 weeks now and my RLS has been much improved. Most nights I've had no symptoms, occasionally mild hot and fidgety legs and one worse night which was during a long haul flight. I can't see any particular triggers/ differences on the nights I did have symptoms. I reduced the iron to 56mg without any flare so far. Last night I forgot to take it and didn't have any symptoms still... I have had periods of remission before so time will tell whether the iron really is a long term solution but what should I do from here? Do I play around with the dose - reduce further or do alternate days just through trial and error? I don't want to OD on iron either... I could request another iron panel blood test after 3 months too..
Iron at bedtime: Hi everyone, thanks so... - Restless Legs Syn...
Iron at bedtime
I would continue to play with lower doses. You can always get up and take more iron. Try 28mg. Try none. See how many nights you can go with none. Glad it’s helping. I wouldn’t worry about ferritin unless you’re prone to anemia. Ferritin level has little to do with RLS. Rather, it’s serum iron that counts. Our brains have no problem sucking up iron from our blood all day long. And our brains use that iron to keep our dopamine receptors chugging along. Studies have shown we actually have more serum iron in our brains than non-RLS controls. But it’s crazy how little stored/bound ferritin iron our brains have compared to controls. It’s just insane. So yes, when serum iron drops at night (which it does in all humans) and we clearly dont have any stored brain iron for a rainy day, our legs go crazy. That is until we (you and me 😃) take some highly bioavailable iron ie ferrous bisglycinate at night.
Always shoot for the lowest effective dose of iron that provides you with nightly relief and forget about your ferritin level. Having constant ferritin tests is an utter waste of time. Once a year should be enough and if the iron provides relief you don’t have to skip it the night before the blood test. The difference it makes is marginal. Welcome to the Ironman Club.
Don't worry about ODing on iron. That is extremely unlikely. since your TSAT was 37%. I would continue taking the 56 mg of iron and redo your full panel test after 3 months.
As Professor Toby Richards said at the RLS-UK AGM in October- it's almost impossible to OD on oral iron.So keep taking it if it's helping.
To see Prof. Richards talk/slides- join RLS-UK.
According to my physician, the body regulates iron absorption so that it won't reach toxic levels. After a certain point, it will stop absorbing or start eliminating it before it damages the liver.
Scub, I want to point out that when you took iron in the morning it did not do much for your RLS, nor did raising your ferritin from 77 to a very healthy 112.
Also, I’m surprised the iron works in the face of HRT. HRT is probably hands down the best thing we can do for our dopamine receptors. It up-regulates them like no tomorrow. Ever hear the saying “no pain, no gain”? That’s the case with HRT. It relentlessly makes the symptoms of RLS worse while it’s keeping your receptors bigger and better. Usually the iron is like whistling in the wind when someone is on HRT, or an SSRI for that matter.
Seriously, don’t worry about raising your ferritin any higher. Go as low as you can with the nightly iron. Eat healthy, exercise, have a little fun here and there and do NOT eat after an earlyish dinner. Meaning (to me) don’t begin eating dinner much past 7pm and don’t walk away from the table stuffed.
Hi there I'm just reading the comment about HRT affecting medication for RLS or making it worst..Am I reading this correct? My RLS was constant as I was prescribed pramipexole for four years. Through the advice on this forum, which is amazing. I am now taking 900mg of gabapentin and had reduced my HRT by half, from 100mg of estrogen to 50mg and 200 progesterone to 100mg. The effects have been horrendous. My mood has dipped so low, emotions all over the place, crying all the time, overwhelmed in any task I need to do, no motivation to do any form of exercise or anything for that matter. Now I'm unsure whether this is a side effect of gabapentin or reduced HRT, but for me, I have increased my HRT to the original dose and am praying that I get my mojo back, as they say. Gabapentin I'm sure has helped my RLS considerably which is fab but I think reducing my HRT was a mistake..Also, can gabapentin cause lethargic low mood? any comments to welcome..thank you
I’m not sure but I don’t think GABA would be causing those symptoms. If raising the HRT gets rid of the doldrums but brings back RLS then do what Scub describes above and take about 56mg of ferrous bisglycinate on an empty stomach two hours before bed. If you stilll have RLS then you have to choose between RLS/sleep and doldrums. Since RLS is the greatest darkness it would not be a hard choice for me.
Hi desertoasis, that's good to know that gaba wouldn't cause those sideffects. Yes, possibly a bit sleepy, which is great as I only take at night. I think it was reducing the HRT which caused my hormones to go wild so will just return to what I was taking in HRT and keep on the gaba as I did all the changes at the same time..Not the best course of action..I was begin taking my iron supplement again before bed as previously I was really ill and thought iron tabs gp gave me ws the cause..I have since bought the gentle iron from the chemist so will try these..Yes, there is nothing that compares to having RLS so thank God I am stable..but being so low in mood is not good either so hopefully the HRT will bring me back up so I will be a happier person with no RLS 🫠 thanks for your advice
Gabapentin can most certainly cause lethargy and low mood. At worst it causes depression and suicidal thoughts/ tendencies in some people. That's why it's always suggested that one start at a low dose and monitor for any adverse effects.
Severe iron deficiency with high feritin levels!
Iron tablets
IV Iron Infusion for RLS
Iron Level UP!
