Prior to switching to a new doctor, due to moving out of state, I weaned myself off all my meds (statins, Tramadol for a back injury, etc) other than a thyroid pill I desperately need, to get a fresh start from someone new. I thought I could control my back pain with just OTC drugs. Doing that set my RLS in motion beyond anything it previously was. New doctor suggested we test my ferritin as all my other blood work came back within normal levels. My ferritin level is 109 which she said was fine.
Reading all your comments, I have started the Tramadol again which is giving me relief, but wondered if iron supplements would still help with my RLS? I read a comment that it needs to be higher (300?) and that can only be accomplished with infusion. Am I wasting my time with an iron supplement or increasing my intake of iron rich foods?
My RLS seems minor compared to most of you ( but not minor to me) and I am just learning how to handle it, but my concern is that I am on my way to becoming worse. I have just started having twitching/ muscle spasms on top of my usual symptoms. I am getting no relief where I use to have a night every once in awhile with no symptoms.
Just wondering about the iron issue. Thanks
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Thank you. I have not tried a food diary. I've considered coffee as a trigger. I have three 8 oz cups a day which in my eyes, is not a lot, but I may try with that first. Most frustrating
I have found that it's often the simplest of things can be a trigger.
For me, the most potent are msg, and raising agents- as in biscuits (cookies) and I love the taste experience of both- aka -- Thai curries and chocolate brownies.😝😥😫
Really. I never thought of that. I thought coming up with trying to reduce my coffee intake was a brilliant idea😂 by me. We eat pretty healthy but still eat breads and some sugars. Now I'm all excited. I know I need to eliminate one thing at a time but after the coffee, I was at a loss. I'll also check MSG in our food for starters. THANK YOU! It's worth a shot.
I agree, we do eat as healthy as we can afford, but you still never know what's been done to our food. I'll check this MSG thing. I know lots of food goes by other names, you are right in saying how do we keep up. I'll peck at this a bit at a time. Thanks for the info
If you eliminate one thing at a time you might not ever get to an answer, What if your triggers are lactose and wheat. You eliminate wheat and continue to drink coffee then you eliminate coffee and continue to drink milk. Your RLS will continue through both experiments and you will never know that either of them affects you.
You should eliminate almost everything at once and reintroduce things one at the time, This is the essence of the FODMAP diet or the Low Chemical diet.
Only about half of the people with RLS (of those in studies) benefit from increasing iron. At least your ferritin is not ‘normal’ but low. It may still help to continue taking iron and raising iron levels further, but your chance of improving your symptoms this way may be well below 50%. Very hard to tell. If you do, please check with your gp and have your iron levels checked regularly to prevent iron overload.
Thank you. I figured as you say, not expecting much from taking iron supplements and iron is not the way I want to go for many reasons. I think I will start a food diary and talk with my doctor more about the iron.
I have chased an iron infusion on the basis that there was at least a 10% chance of a "cure" or a significant improvement.
The experts at Johns Hopkins talked of an 80% chance of an improvement. I hope that such a prestigious institution would have some evidence to back it up. But we are in the days when science is regarded as just another opinion and another source of false news so maybe not.
Two articles on iron which you may find useful. I found my RLS improved when I got my levels to 205 but recently my levels dropped down to 138 and my RLS has been playing up every night.
I'm going to see a haematologist to discuss an IV iron infusion, as I know many people have seen their RLS disappear once serum ferritin levels above 300 are reached.
However, as Lotte and Madlegs have said, IV iron won't help everyone and haemachromatosis ( iron overload) is a serious concern
I have since spoken to doctors about this and read reports on Johns Hopkins website and it seems that levels above 300 are now seen as desired for RLS sufferers. I doubt very much you would suffer from haemachromatosis by taking oral iron supplements and if you had an IV iron infusion of Injectafer, the hospital haematologists would monitor the situation closely. It would appear that most people's iron levels do not increase to dangerous levels and the overwhelming majority of IV iron infusions are safe.
Bear in mind that raising iron levels will help 50% of sufferers ( excellent odds!) and you won't know if you are someone who would benefit unless and until your serum ferritin levels went above 300. Also, it's the levels of iron that get through to the brain that seem to make the difference and I suspect some of us have more permeable blood/brain barriers than others.
Second, someone posted a few weeks ago to say that had seen a specialist who gave him iron infusions although his ferritin level was the same as yours - he went up to 350 and there was a huge improvement.
I have read the posts of at least three people who said that they have to be above 300 to feel good.
Like you i decided to wean off the morphine i was taking for chronic back pain. I was taking 80mg and as soon as i weaned down to 40mg which was when we were on holiday my RLS reared its ugly head . I understand how you are feeling and my thoughts are with you x
I used to take an iron supplement every day but still had rls symptoms. Based on the advice of some on here, I started taking iron bis-glycinate (28 mg) every OTHER night and that has really worked for me. Good luck!
Hi fellow Rls sufferer, I’ve been on the brink of madness for a while , coming off Ropinarole , adding Tramadol and dietary restrictions have helped. I’m still working at it , but an anti inflammatory diet has made a big difference....caffeine has been eliminated as well as gluten and dairy among other things. I seem to be a standstill now, but thankful for the improvement . I’m also taking iron , and may have to push for infusion. You really hVe go take charge of this dreadful condition as doctors don’t seem to know or appreciate it’s extent . Good Luck !
Please try eliminating sugar from your diet, too. Sugar is a big trigger for my legs--even natural sugar in fruit, to the point that I mostly restrict myself to low glycemic fruit such as berries. And it isn't just wheat that has gluten, which is a big trigger, too. Rye and barley contain gluten, and corn has a different form of gluten, but it's still gluten. I eat a little corn and oats and no wheat, rye, or barley. All grains eaten should be organic, because commercially grown grains are sprayed with chemicals that land directly on the grains and when you eat those grains, the chemicals accumulate in your body, causing even more problems down the road.
I wouldn't discount the possibility that raising iron further might help. I have read accounts of people who found relief when they raised levels from a starting point of around 100 to over 300. As madlegs points out it only helps about 50% of people but that still gives you a 1 in 2 chance of success. I would endorse the every-other-night regime for improved iron absorption.
Another prevalent trigger to be aware of is red wine. There is a school of thought that a cup of coffee can actually help when symptoms come on. It certainly doesn't seem to be as reliable a trigger as alcohol or sugar.
how to possibly get off thyroxine with lugols iodine.
Test.... use your finger..not cotton
place your palm facing up and put a drop of Lugols Iodine on your wrist and rub in a circular motion.
Leave it alone, best done before bedtime so you do not wash it off, but can be done in the morning.
If it disappears in less than 4 hours..you are very deficient.
Should last 10 to 12 hours to be normal.
If you are on the medication from the drugpusher, your body is addicted to it...done on purpose.
You start slowly with Lugols Iodine every day and slowly wean yourself off of the drugs from the drug pusher over several months.
Do 2 drops every day and see how you feel. After some weeks do 3 drops in water everyday. Do 4 drops after some months if you feel fine ..... slowly weaning OFF the drug. YOU are your own best doctor.
Your body will tell you everything if you pay attention to it....
Everyone is different..Every Organism is very different, so there is no set rules when it comes to your body no matter what drugpusher push
Lugols Iodine will give you Energy and what most of the know it alls have no clue about especially the ones with a DR. before their name like DR. Bullshiter charLIE ward is that your Blood travels thru your body every 12 minutes and passes by your Thyroid...This is the way GOD SOURCE created you..a PERFECT MACHINE / ORGANISM / BODY/ VESSEL that you are Renting.
IF there is IODINE which is antibacterial, antifungal and antiviral in your Thyroid..then all those pathogens are killed.
Since most do not have any...cancer and those pathogens thrive....but with Lugols Iodine...they can not survive..reason they put Bromides and Fluoride in your food to prevent your Thyroid in absorbing Iodine
and no drugpusher or genie decode will ever tell you that cause they do not know it.
Nascent iodine and kelp is simply too weak to kill cancer..Lugols Iodine is heavily censored by the FDA..a criminal organization with the Largest prvate army on the world, to make sure the sheeple do not HEAL themselves and instead go to THE MEDICAL MAFIA.
The beauty of Lugols iodine is you can take it everywhere [ covered so no sunlight hits it ] and will kill all pathogens in water you drink in any country.
In the old days it was used for insect bites, cuts and you gargle with it for a sore throat to kill infections and then take some Lemon and real honey to soothe the Throat.
Everyday a must
4,5 drops of Lugols iodine in good water..distilled being the best
Do not allow your drugpusher to ever put you on Estrogen therapy..that is CANCER made with urine from a horse and that does not belong in your body.
Get natural Progesterone from wild yams...Pfizer goes there extracts it and then changes the molecular
structure so they can can sell it at $95.00 but the problem is these giniuses do not know is that once you change the molecuar structure it will not work. Native American woman have been getting it from wild yams way before the Medical mafia and the holey buy bull came out
Raw and organic apple cider vinegar, taken daily in a glass of water, helps to alkalize the body, which can reduce tumor formation.
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Blood donations and ferritin levels.
Ferritin level 
iron levels
The link between Iron and RLS
Iron article
