Hello oh wise ones. I’m constantly here lurking in the back and rereading posts to take info back to my doc. My doc has very little knowledge of RLS but she is very open to all your information so I’m eternally grateful.
Been trying to up my ferritin for the last year. Started at 8 and now a year later at 87. I go for bimonthly blood tests and over the last two months it jumped from 85 to 87 😑. The previous reading was 47 ( to 85) so my iron absorption is very erratic.
I take 100mg every night with vitamin on an empty stomach. I did try taking it every other night and my ferritin levels dropped so back to nightly. Apart from black stools I suffer no sides effects.
I was rather disappointed with todays ferritin reading and asked about iron infusions. She wasn’t keen and says that although she does do them she really would rather not. No real reason was given but her face fell so I take it another patient didn’t fare so well. She would rather I keep going with the iron tablets for now.
I’m on an anti inflammatory diet (thanks Eyrl) and was given Horizant 9 months ago but that has been less and less effective as of late. So since I seem to have RLS at night ( waking me up but not bad enough to have me having the room yet and I have been there) and bits during the day I’m thinking to come off the Horizant and just see what state I’m at without any RLS meds. The doc said this was my choice but to very gradually cut down and then maybe think about Gabapentin instead if the RLS is still there.
I’m also on HRT and that sorted out most of my sleeping issues so just the RLS waking me up now as opposed to very bad insomnia a while back.
The thing is and finally my question….. would I be better off trying liquid ferrous sulfate for a while and see if I absorbed that better?
I’m fast discovering that my body has its own rule book.
My RLS is secondary and very very likely related to anemia ( had it very bad for a few years) and never had RLS until I finally fixed the anemia. Then it went from nought to ninety in a matter of weeks.
Many thanks.
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Redeyed
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HRT makes RLS symptoms worse. Yes liquid ferrous sulfate is absorbed better. I assume the vitamin you are taking is vitamin as that helps the absorption of iron. Also I assume you are taking it at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since you say you are taking it on an empty stomach. If horizant is not effective, it can be increased up to 1200 mg.
Not sure of the logic for that! Surely if RLS was oestrogen- driven we women would find our RLS improved with the decrease in oestrogen in peri menopause/ menopause?
Hi LotteM, my RLS became chronic when I started HRT. I told this to Dr Buchfuhrer when I started seeing him. He said that in fact HRT can make RLS worse. The HRT I was on contained testosterone as well as estrogen. Not sure which one was the culprit but if I had not started HRT I would have never made the horrible decision to begin taking ropinirole. But, as we know, what triggers one person does not necessarily trigger everyone.
Thanks Birdland, good that we all share our experiences. The crux here is "can" instead of "does". For some HRT worsens RLS, for some it eases it. Oh, if it were only more consistent and better understood!
Isn’t that the truth?!?!?! We can only hope there will be some kind of breakthrough in the near future and we live to see it. Unfortunately for me, it seems everything that “can” make RLS worse “makes” my RLS worse.
Thankfully HRT doesn’t seem to affect my RLS. I’m not on testosterone so maybe that’s the bad one. I’d be very reluctant to give up my HRT, it’s helped me sleep and sorted out a slew of other weird and wonderful symptoms but my RLS doesn’t seem any worse on it.
Thanks for the info on Horizontal doses. I had assumed I was at the max on 600mg. Not keen to go higher but at least I know I can. Will try some Floradix now 👍
If I were you I'd push for the infusion. Injectafer dramatically improves RLS for 60%. Many people only respond when ferritin is above 300.It's very difficult to get to 300 via oral iron.
I think you’re right it’s just there are not any guide lines available for RLS so my doc is just going along with the info I bring. There are probably limits on her mind to my ideas as well. I’ll have a proper chat with her next time I’m in there about an iron infusion. Thank you.
Can I just ask if what I need to request for an iron infusion? If it’s Injectafer for example, how many infusions or what the recommended procedure is? My doc won’t have a clue but she will look it up if I give her my version of things 😅
Are you here in the UK? In the UK, a haematologist has to agree to the infusion and it can only be done in hospital.Injecater is a one off infusion that takes about 30 mins in total.
The Royal Cornwall hospital will do infusions and I managed to persuade St George's in Tooting to give me an infusion.
They work extremely we for 60%. I'm in the 20% for whom they don't help.
Most people with RLS cannot keep iron levels in their brain so will need repeated infusions every 6 to 8 months.
In Japan so not sure what their procedures are but I don’t think I need to jump through hoops as such, just need to convince someone to do it properly. Thank you.
It is ridiculous for you to have to fight to struggle to get your ferritin up like that.. Iron infusion of e.g. ferric carboxymaltose or similar would straight away increase it significantly so you would then be able to tell within a few weeks if you are one of the lucky ones who can benefit from raised ferritin . You will then be able to progress with how to manage your RLS, either iron works well, a bit or not at all for you. So then you can work out if other treatments are necessary . Please please ask/beg/plead your doc to have it. Good luck . xx
I hear you. Will definitely bring it up again next time I’m in there. It’s just the medical profession’s knowledge on RLS is so non existent ( where I am anyway) that I’m the one bringing in all the info and I feel like I might as well be asking for surgery the reaction I get sometimes. But I will persevere.
My neurologist does not want me to have an iron infusion. Claims too many negative possibilities.However, if 100 mg daily is necessary, mine comes in 28 mg tablets and even one causes constipation.
You may need to switch neurologists. If she is open to it, show her the Mayo Clinic Updated Algorithm at Https://mayoclinicproceedings.org/a... You don't want to take 100 mg of iron. That is way too much. You could take 2 tablets, but no more. If your tablets are 28 mg, it sounds like you are on iron bisglycinate. If not, switch as it is less likely to cause constipation. Otherwise laxatives that are safe for RLS include Laxido, Dioctyl, Polyethylene glycol 3350 powder packs. As widebody mentioned you might try liquid ferrous sulfate.
Hi Redeyed, I tried all the over the counter iron I could get for months and couldn’t get my ferritin to budge. My Doctor then prescribed liquid ferrous sulfate. I took it every day for a year and got my ferritin to 200. (I took it in the morning with my coffee, because I didn’t know any better.) It did nothing for my RLS. The nurse told me to stop. It took 18 months to fall to 30.
I then got an infusion. Oh wow, it helped more than anything. I do take iron supplements ferrous bisglysinate now seems to be helping me. My goal is to stay around 200. It ain’t easy.
Every thing you need to know about iron and RLS is right here, it’s not a case study.
Thanks WideBody. Don’t think I can get it on prescription but already have the Floridix . Great to know about the Dipyridamole too as there is a very slim chance of me getting an opioid prescription. All this info gives me hope too. Cheers.
Hi Redeyed. I just want to share my experience with iron.... like you I was inching upwards one notch at a time with ordinary iron. One December about three years ago, I decided to see if gluten and lactose (as well as other things) had a bearing on my RLS. I went on the FODMAP diet and for weeks and weeks was a saint. It didn't help my legs because I was augmenting at the time but I had never heard of augmentation then. Eventually after three months of FODMAP I had another iron blood test. I had gone up a whole 25 points in the time it usually took to go up 3 or 4! I certainly started wondering what had made the difference...
My theory is that I do/did have an intolerance to them and by being on the diet, my gut was able to repair itself and do what it's supposed to do and absorb things properly. Since then, I've stayed of lactose and wheat and use ancient grains- or none; and lactose free milk. My gut is definitely happier.
I was already booked in to have an iron infusion, and went ahead with that though my ferritin was at 100. It reached 460 at about three months. Sadly for me, I don't think that ferritin is my issue but it was well worth trying.
I hope this might help get yours to an effective level. It's certainly worth trying.... Good luck.
Thank you restlesstoz. I rarely eat wheat and to be honest it hasn’t helped my RLS in any way but it has helped my gut, as you mentioned so I will stay off it. Will try to keep off the dairy now and see what happens next. My Doc recommended the FODMAP diet too after I overdid the beans on a vegan diet trial but I didn’t try it then so will look into it now. It lovely to hear everyone’s experiences because I know we’re all different but we definitely resonate in some aspects. Thank you.
Yes, Redeyed, I have to agree that my FODMAP experience did nothing for my restless legs but really has helped my gut and therefore my overall health which must be good! It's hard to remember that there is more to us than just legs, though our minds are centered on them. good luck with it all.
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