Hello I'm new so I appoligise if this has been asked before still navigating around the app. I've had rls for around 10 years but I would only get symptoms approx once a month so managed it without medication around 5 years ago I moved to Spain for 4 years and was completely symptom free for the whole off that time no idea why, around 6 months after moving back to the UK symptoms kicked in again and I couldn't sleep I had around 3-4 hours sleep a night was left exhausted during the day, so I decided to get help from my gp who prescribed me gabapentin to take in the evenings had my first lot of bloods done a d ferritin was 45 so then he prescribed ferrous sulphate to help increase this in the hope of higher ferritin less symptoms but instead of it going up it has gone down now at 31 he's not sure how to move on from this so my gp has emailed a specialist for advise has anyone else's ferritin dropped while taking this and how have you managed to increase it as he said its not low enough for an infusion.
Ferritin dropping : Hello I'm new so I... - Restless Legs Syn...
Ferritin dropping
Try looking up the Iron Disorders Institute site.
They have great ideas on increasing iron--- and all matters iron. Basically a Haemocromatosis site.
Otherwise an iron infusion would be in order-- but there seems to be difficulties in getting them.
Good luck.
Thank you
It is low enough for an infusion. However, the NHS is in such a state that it's difficult.Salford, St George's in Tooting & Royal Cornwall in Truro all have haematology departments that are aware of the need for iron infusions for RLS. If you live in those areas, you might be lucky.
Otherwise you may need to pay £800 for a private iron infusion at the Iron Clinic London or Manchester.
How are you taking ferrous sulphate?
Studies show ferritin levels raise more quickly if you take once every OTHER day. Uk guidance is to take early in morning as hepcidin levels are lower. Hepcidin blockes iron absorption.
There's a printable page on iron therapy in RLS-UK website under 'Useful resources'.
Print and show your GP.
Welcome to the forum. You will find lots of help, support and understanding here.
First off let me make sure you are taking gabapentin correctly.
Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If 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 need more than 1200 mg, take the extra 6 hours before bedtime.
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."
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 calcium-rich foods within 2 hours for the same reason .
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment at Https://mayoclinicproceedings.org/a...
One possible reason for the drop in ferritin may be how you prepared the first time compared to the second time. This is the normal advice: Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.
Otherwise you should see a hematologist.
This is the normal advice on improving very low ferritin:
You do want your ferritin to be over 100 as this helps 60% of people with RLS and in some cases completely eliminates their symptoms. If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise 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. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Take it every other day as more is absorbed that way 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 (TSAT) is below 20, you may need an iron infusion.
If you take magnesium (or magnesium rich foods), calcium (or calcium rich foods) 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. 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 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion.
With your low ferritin it would be best if you get an iron infusion to quickly bring it up. If your doctor won't prescribe it you can also get one privately by paying for it, but it costs around £800.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Good morning,Wow that's alot of Information thank you,
I take 300mg of gabapentin a couple of hours before bed and have a hot bath each night before bed,
I take 200mg of ferrous sulphate in the morning with a glass of fresh orange juice this is every morning, recently I've started getting alot of pain in my knees so taking ibrophen for that and sleeping with a pillow between my legs and use deep heat on my knees throughout the day and night this is all the medication I take I walk around 25,000 steps a day while I'm working this is 5 days a week.
I try to keep a balanced diet and done eat processed foods I make everything fresh, and make my own sauces as I know a lot of shop bought ones contain sugar.
Thank you I will look into all the other information you have provided me with.
Good morning,I live in Blackpool and I take one a day in the morning on a empty stomach. Thank you will do.
There is some disagreement among specialists as to whether to take the iron in the morning or at night. It is true that hepcidin is lowest in the morning and that it blocks iron from being absorbed but the Mayo Clinic says There are data from nonhuman primate studies that iron is taken up by the brain from the blood at higher rates at night than in the morning and taking it at night can prevent you from noticing any stomach upset it might cause. Also Karla Dzienkowski, executive Director RLS Foundation says "Take the iron at night; iron redistribution in the brain is highest during the nighttime hours and studies suggest it may be better absorbed later in the day" In general RLS experts recommend it be taken at night.
At only 200 mg of ferrous sulfate it is no wonder your ferritin hasn't increased but it is still strange it has decreased.
Thank you Sue I can change it to nighttime to see if it makes any difference as its currently going down anyway I can't see the change making it worse and hopefully it could help increase it, a d then see what the gp comes back with once he's heard from the specialist.
Hi Gib, you’re young to have such severe RLS? Are you taking an SSRI or birth control (even the coil) or Metformin or Melatonin? These substances (among others) will trigger RLS symptoms in those pre-disposed to the condition. Fascinating that your RLS disappeared while in Spain. Did you discontinue any meds at that time?
Body levels of Ferritin have absolutely nothing to do with RLS, unless you’re anemic. Zero to do with it! This has been proven in clinical trials. It is a fallacy that is perpetuated on here. Ignore it.
A key component of RLS is something called serum iron. Serum iron is the free floating iron in your blood that acts as the grease and glue to keep dopamine receptors chugging along. We who are pre-disposed to RLS have naturally lousy D2/D3 dopamine receptors and rely heavily on that serum iron. When it plummets at night (as it does in all humans) we get RLS. We with RLS also have little to no BRAIN ferritin. We just can’t seem to store much iron in our brains for a rainy day, or should I say night, no matter how high or how low our BODY ferritin is. The non-RLS world has great receptors and plenty of brain ferritin they can utilize when serum iron plummets at night.
You see, dopamine that leaves our brains as a neurotransmitter from the receptors (in our case lousy receptors) will bounce down our spinal cords, eventually reaching our arms and legs (called the peripheral nervous system) and is what quiets them. The non-RLS world has a stream of that dopamine neurotransmitter coursing through their central and peripheral nervous system. We have more of a drip. By day we’re usually fine, but at night, when serum iron plummets (as well as the pre-receptor pool of dopamine), we get RLS . Heaven help us if we take something that interferes with that drip, like the aforementioned SSRIs, or if we injure our spines. If we injure any of the nerves in the central or peripheral nervous system we may develop worsened symptoms - because it’s an impediment to that drip.
One of the best treatments for RLS is to simply take about 56mg of ferrous bisglycinate on an empty stomach about 1.5 hours before bed. Your RLS should evaporate in about one hour, for one night, if you’re like many of us on here. Even if it provides moderate to substantial improvement (rather than complete) stick with it. It’s also wise not to eat much past 8pm and never over-eat in the evening.
Here are others happy members of the Ironman Club:
healthunlocked.com/rlsuk/po...
healthunlocked.com/rlsuk/po...
More recently:
healthunlocked.com/rlsuk/po...
healthunlocked.com/rlsuk/po...
Here’s more/most of the Ironman motley crew:
healthunlocked.com/rlsuk/po...
Hi DesertOasis,My mum also has it but hers isn't as bad she only gets it every couple of weeks, I don't take any other medication and I'm not on any form of birth control, not sure why it stopped when I moved to Spain but considering the move back by the end of 2025 to see if it helps, I don't have any underlying health problems that could trigger it and didn't start taking any medication at all until around 6months after coming back to the UK which is when it returned with a vengeance.
Hmmm, might be worth it to have hormone levels and thyroid checked? Well good luck with the iron at night trick. Keep us posted!
Were you walking 25,000 steps a day while in Spain? If you’re walking to the point of injuring your knees that means most likely your body is releasing a lot of “hepcidin.” Hepcidin blocks the absorption of iron, especially from such a bio-unavailable source as ferrous sulfate. So that would explain not only why your ferritin is low but also your serum iron will be lower than your average RLSer who isn’t doing marathon walking. So this walking “might” be your RLS trigger. Is your RLS most noticeable below the knees? Regardless, when there’s a lot of hepcidin in your body, and low serum iron, your RLS symptoms can be anywhere.
I was doing around the same in Spain the only difference is I was also swimming around 5 days a week in Spain, it is also below the knees, I don't drink alcohol so I know that won't trigger it my partner and I always go for a walk about a hour after tea so around 6.30pm. In Spain I didn't drive I walked everywhere here in the UK I drive to most places so my walking is mainly done at work apart from a couple of thousand steps in my evening walk
This is all just for informational purposes. Take what makes sense and ignore the rest. Btw, there’s nothing like sunshine and vitamin D to keep hepcidin at bay and hence serum iron up. Vitamin d (especially from the sun) is great stuff. It gets converted by the body into this quasi hormone/steroid that is very anti-inflammatory. Cheers!
Here’s an article to help explain the craziness I just posted. pmc.ncbi.nlm.nih.gov/articl...
OK thank you the only real change I can think is the change in climate x
See my post from a second ago.
We might all need to move to South Africa or Spain or Greece pubmed.ncbi.nlm.nih.gov/222...
I was easily able to increase my ferritin to 150 using ferrous sulfate + 500 mgs vitamin C. Took a few months, that's all. It had been 29.
Be sure you check it again after 3 to 6 months. If it stays there then you don't need to keep checking.
Have you been tested for celiac disease? Have you been tested for pernicious anemia?
Hi Gibralter2023, the reason your iron has gone down is not to do with ferrous sulphate or pregabalin but due to the fact that you almost certainly have an ongoing anaemia problem . I’m sure this is aggravating your RLS and until they sort out the anaemia and get your blood levels back up with. an iron infusion or whatever is required, then your RLS will stay bad.
There are loads of reasons why young females may have anaemia which are very readily treatable, so I think the sooner you see a haematologist or suitable specialist depending on your symptoms and blood levels e.g. a gastroenterologist or gynae doc, the better . I’m sure they will sort you out soon
Very best wishes and please keep us posted as to your progress 🤗
You need to make sure you don't have internal bleeding first of all and most importantly
Excellent point!
Hi, My ferritin was 6 in 2022 I was having horrendously heavy periods and so this was depleting me very quickly it's taken ages to get it up. G.P checked my bowels too incase I was bleeding from those. I have ceoliac disease to so that affects absorption. You can get a simple blood test for that.I hope you get the treatment you need. I take my iron with fresh orange juice on an empty tummy preferably at night.
Dear Gib.2023
I have your mail winth interest.
I have suffered RSL formany years.
in the begining it was driving me up the walls. I was walking the
streets of my town in the early morning half asleep
I would suggest you see a nurolgiest as it is to do with messages from he brain. there are different medication or combination of mesication which can help, but the specialest
will try the different ones to get you on the right combination
that is my case and I Hope itwill helps
ER
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