So it is almost exactly a year since I first got the diagnosis of RLS, having suffered for many years with the symptoms. I share the track of the year to add the growing amount of information for us all.
In the past year I have stopped drinking alcohol, drink no caffeinated tea, one cup of coffee in the morning, and I have changed my diet enough to have lost one stone.
I have been taking Ferrous Fumarate (210mg) twice a day, together with Vitamin B12, Vitamin C, and Mg( in the evenings only).
My quality of life has changed beyond recognition. I have energy. The night wakenings have reduced from up to 30 a night to 1 to 3 a night. I feel tired not wired.
I am a TOTAL wimp when it come to drugs and have refused any on offer.
I have had three blood tests. November 2020 gave a Ferritin of 50. May 2021 gave a Ferritin of 155 and November 2021 gave a Ferritin of 222. My Vitamin B12 reading on the blood test has moved from 182 to 273, i.e. from below the scale to low on the scale.
Most of the time I am not getting symptoms of RLS. I still limp a little after a poor night of being woken up.
If therefore as a 55 year old post menopausal woman, I should not be losing Iron, should I stop taking the Iron Fumarate?
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SomersetLily
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222 ferritin is a reasonable figure.If you are relatively free of rls symptoms, then I'd be inclined to stop the iron supplement. But get the serum ferritin tested in 6 months or if symptoms reoccur.
Hello, if your ferritin levels had been any different i.e. below 100 I would have suggested that you stop the ferrous fumarate.
However, I would have suggested you start ferrous bisglycinate instead.
The reason for this is twofold.
Recent studies have shown that doses of iron over 60mg are more likely to actually reduce the amount of iron you absorb. You should have been better taking a lower dose in that case.
The other thing studies show is that the more often you take iorn, the less is absorbed.
It's recommended that you only take iron evry OTHER day i.e. bi-daily. This can increase how much you absorb by up to 50%.
By taking it daily, it makes it harder to absorb any and if you take it several timesa day, almost impossible.
Unfortunately, it appears that many Drs are still unaware of this and carry on thinking that the more iron you take and the more often the better it will be. The opposite is actually true and this is due to a hormone called hepcidin.
It is still widely accepted that taking iron in the vening at least 2 hours after eating helps absorptionm.
It is still widely accepted that taking vitamin C (ascorbic acid) or folic avcid at the same tkime can help, the acid helps the iron be absorbed.
Conversely then, it is NOTa good idea to take anything that decrease stomach acid. This could be an antacid or it could be magnesium.
Hence do NOT take magnesium at the same time as iron, leave a 2 hour gap.
If you have a vitamin B12 deficiency, it's a good idea to find out why this is. It may be a lack of B12 in your diet. If you eat meat then this is a little unusual. Another reason may be that you are failing to absorb it fully. If this is the case then taking an oral supplement may not be a great idea, you simply won't absorb it.
Injections or an oral spray may be better.
More about the iron.
The recommendations are that for soembody with RLS, ferritin levels need to be at least 100 and ideally 200 plus.
IF ferrtin is less than 75,m which yours was originally then an oral supplement is recommended because at this ferritin level it stands a good chance of working.
I'm not no going to advise you abut stopping the iron or not. My only suggestion is that if you do decide to continue then do as I've written above.
It's your decision. Below is some information to help you make that decision.
1) As Madlegs says, get your ferritin level checked regularly, it may fall again.
2) Also get your transferrin saturation checked If this is more than 45 it isnot considered safe to take iron. This could lead to iron overload.
3) If ferritin is between 76 and 100 an IV iron infusion is recommended. No recommendations for levels over 100.
4) Your ferritin is already over the ideal minimum. If this has had a significant impact on your RLS then it has worked.
5) Sometimes ferritin levels can be raised because of inflammation in which case even a level of 200 may not help with RLS.
I have never understood why the criteria for an infusion on the latest Mayo Clinic Algorithm is such a limited range for ferritin i.e. between 75µg/L and 100µg/L, especially when you are trying to raise it to levels over 200. I wanted to use the document as leverage to get an iron infusion but having managed to raise my ferritin to 140 with iron bisglycinate I then found myself outside the criteria. I eventually emailed Dr Buchfuhrer and his response was basically that the document was a consensus and while some experts were worried about the risks of high iron levels and wanted a lower limit e.g. 50µg/L, others had been happy with much higher e.g. 200µg/L so they compromised. However he said that rather than follow rigid guidelines he took each case on its merits and carefully raised iron and then checked for benefits to RLS and for any negative side effects. Some of his patients needed ferritin over 200µg/L before they saw an improvement in brain iron. Generally the feedback I have had from several sources is that levels up to 400 are not too worrying and we all know the acceptable range documented in the standard blood tests is up to about 250µg/L.
The Vitamin B12 thing maybe as a result of quasi vegetarianism (my daughter was vegetarian, but has just gone off to university so things have changed). Since I have applied myself to improving Vitamin B12 the amount in my blood tests have improved significantly.
I have a pretty good diet on the whole so was embarrassed to find that my B12 had deteriorated so much!
I understand what you are saying about the iron and will go to seek alternatives, and reduce the amount and monitor the results.
I have found Mg to help but only at nighttime (in fact taking too much during the day gave me vertigo). I understand what you are saying about the deleterious effect on Fe absorption.
Hi Elffindoe, I hope you don’t mind me jumping into this thread (I’m new here so not sure how this all works yet). I have also sent you a direct message in case that’s preferred. Despite taking Ferrous Sulfate daily, my ferritin levels are very low (between 6-24 during the last 2 years). My RLS symptoms reduce hugely when my ferritin levels are at the higher end of this range and I’m hopeful they would reduce further if I can get my ferritin levels even higher.
I see you recommend taking ferrous bisglycinate but I cannot find any posts giving the recommended dose or when and how often I should take it. My current lack of sleep makes it difficult for me to concentrate on research so sorry if I’m missing something.
I live in the UK and am pretty sure my GP will not prescribe it as they will say it’s too expensive. However, I’ve looked on Amazon and can buy this myself, which I’m very willing to do but am confused by all the different brands and strengths available. I would be extremely grateful for any advice you can give on this.
Elffindoe was a regular contributor to this forum but he hasn't posted for some time. No one knows for sure what has become of him.
I take 24 mg ferrous bisglycinate (with calcium). See pic below. Any reputable brand should do the job.
The most important thing when taking iron supplements is to take it every 2nd day with vitamin C eg. orange juice.
Another thing to know, iron supplements should be taken half an hour before meals OR 2 hours after meals.
It typically takes upward of 6 weeks to see any results. If you've been taking iron supplements for several months and you're not seeing any improvement, I'd be discussing that with your doctor.
Iron supplement
My opinion here only——-, yessssssss, stop, 275 is more than high enough for a woman. Congratulations on being a wimp and instead a thinker and a doer. Remember, you can always go back on the iron in a nanosecond. Please keep us posted. Your experience of taking iron (among other things), getting relief, stopping the iron once over 200 will be extremely useful to us all.
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