Hi there, having found this forum two weeks ago, am fascinated by everything I am finding out about this damn RLS! But had a blood test this morning and my ferritin levels are 48ug/L, serum iron is 14.1 and serum TIBC 53.7 and the transferring sat index 26%
When I talked to my doctor last week, having sent her 5 articles and a video about the new iron approach to RLS, she would not agree to giving me opioids.
So how much iron should I take? I understand that I should take oral therapy every other day, preferably at night, acc to the Mayo article, and on an empty stomach (?how to take at night?!)
Is there a recommended type of iron? A particular make?
This is my plan….
I am going to start cutting down my pramipexole - have a tablet cutter. So will half them and slowly reduced over 2 - 3 months.
Will take oral iron therapy every other day/night.
And will explore red vein krakom to help (Teddy J recommended)
Am I on the right track? Any other advice?
Many many thanks
Les xx
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Take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. You don't need to take it at night. I used to state that thinking it was better absorbed at night but I was corrected and researching it, they were right. If you have problems with constipation switch to iron bisglycinate. When your ferritin is between 75 and 100 you may need an iron infusion since iron isn't absorbed as well above 75. Don't take tumeric as it can interfere with the absorption of iron. If you take magnesium or calcium take them 2 hours apart as they interfere with its absorption. Also antacids interferes with its absorption. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months .
To simplify... my ferritin was 49 with raging RLS - I raised it to 105 in 3 months (reducing the horrible RLS to zero, but not the insomnia) with Ferrous Bisglycinate Chelate - totally non constipating and innocuous to take with no side effects. This formulation is a patented formula so any brand will be the same. I took a 17mg capsule, mid-morning away from food, costs $4.95US. It's sometimes called Gentle Iron as a supplement. Here's more info on the iron panel numbers...
I didn’t do well with ferrous sulfate. What did work was liquid ferrous sulfate with vitamin C. At night on an empty stomach. After a couple years I switched to ferrous bisglysinate, it also worked. So I definitely recommend those two.
Next, check your Vitamin D. Low iron has been correlated to low Vitamin D. Vitamin D blocks Hepcidin. Hepcidin is created by the body to block iron absorption.
I suffer from glycine sensitivity and diarrhoea so I don’t tolerate ferrous bisglycinate. I did well on ferrous fumarate until recently when probably I hit a ceiling of how much my body can absorb. Now it’s causing me more problems.
Ferritin levels have little to nothing to do with RLS. If it did then a low to normal level (such as your 48) would cause RLS 24/7/365, not just at night. Something happens at night, especially between 10 and midnight, that brings on the RLS. That something is a DRAMATIC dip in serum iron, not ferritin. Since the RLS brain is unable to store much iron, like the non-RLS world can, we rely VERY heavily on that free-floating iron in our blood. When it drops, with a nadir of midnight, we get RLS.
PLEASE do not buy ferrous sulfate. Instead buy ferrous bisglycinate and take it one hour before bed on an empty stomach. Taking iron this way gets rid of my RLS in one hour. It should do about the same for you as long as you are on the DA and even while you are reducing. However, when your dose of the DA gets really low, or you are off it, the iron is unlikely to be enough. Kratom might make up the shortfall at that point. I read that your RLS woes began 30 years ago. You were young at that point. Too young to have severe, nightly RLS without anything else going on. I’m going to take a stab in the dark and guess this is when you got a virus for which you are on an anti-viral. Viruses are especially evil for people pre-disposed to RLS. Viruses raise the level of hepcidin in our bodies. Hepcidin is our bodies’ defense mechanism against invaders like viruses. It sequesters iron out of the blood stream. Very bad for we with RLS, but also very bad for microbes which love and need iron to survive inside us. Ahhh Mother Nature, ya gotta love her.
Anyways, I’m not sure whether it’s the virus or the anti-viral (or your thyroid) or some combination, which caused you 25 years of suffering, until you started on the DA. Anti-virals, depending on which kind, can act as a dopamine antagonist or a dopamine agonist. Odd, I know. You see, we with RLS have genetically lousy D2/D3 dopamine receptors. For most of us, and for a good portion of our lives, those lousy receptors are good enough such that we don’t get RLS. But throw a monkey wrench in there, like a virus, or an anti-viral, or older age and we get all out RLS. I would have to research your anti-viral to see if it is a dopamine antagonist. Plus, you have thyroid issues which does seem to trigger RLS as well.
EDIT: Well that took all of two seconds. Your anti-viral sounds like it raises serotonin and even reduces the depression associated with some viruses. So that means it’s a dopamine antagonist. Bad for RLS in the very short-run, but may be very good for RLS in the long run. You see, dopamine agonists down-regulate our already lousy receptors even further - in the long run - as you probably know by now. Dopamine antagonists, like your anti-viral, should do just the opposite, theoretically speaking. pubmed.ncbi.nlm.nih.gov/186...
So about six weeks ago I got Covid. For four nights I had a fever and I had no RLS and no need to take iron. Fever = greatly enhanced dopamine release. After that the RLS returned but then got worse when I developed a secondary bacterial infection. Then worse yet again when I got a flu shot. I have no doubt hepcidin is firing on all cylinders in my body right now. Fortunately, by taking more iron at night than usual, I am still able to get rid of the RLS. However, if I lie on my back I can still sense the RLS. Rolling over onto my side/stomach relieves that last little bit.
Your take on this is interesting. Do you know if is there any connection at all between ferritin and serum iron levels? (BTW, I had HORRIBLE RLS for a night after my Covid booster).
I’m surprised just one night. I would have to do research to see if there is a connection between those two parameters. My guess is not much connection. Serum iron varies greatly hour by hour and day by day which is not true of ferritin.
I've been taking dessicated bovine spleen supplements, and my ferritin levels have stayed over 200 for months. Not sure if this is helping the RLS, as I am tapering off ropinerole right now. I may go back to the ferrous bisglycinate as per your recommendation, as the bovine spleen is a bit expensive. Also taking L. plantarum299V. See:
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