Restless Legs Syndrome (RLS) Discussion Board

Triggered from another discussion http://bb.rls.org/viewtopic.php?f=5&t=10507#p99047 I would be extremely interested to collect some data from people who have used oral iron supplements. To make a long story short (and save you reading through that thread, even though I think it's an interesting read), I took (more) oral iron supplements despite having high ferritin (about 225, pretty stable for 4 years from 2014-2018) and ate more red meat (low carb diet). I did see some RLS improvement but my ferritin dropped down to 180 after 4 months. There were other reasons why my ferritin could have dropped - rooted in alternative medicine (silent inflammation/leaky gut treatment), because according to conventional medicine my ferritin should have risen or stayed the same.

If you had your ferritin taken before and after a period of supplementing iron orally, could you please report your experiences? Dosage (if you remember), time and change in ferritin levels. I would be very interested to know how oral iron affects RLS symptoms and ferritin levels, regardless of whether you have high or low ferritin.

My ferritin went from 60 to 90 over a 3 year period of taking 65mg ferrous sulfate +500 mg vit C daily. No change in RLS symptoms that I could tell.

My ferritin went from 42 to about 650 taking oral iron (65mg with vit. C) around 9AM. It took about 5 yrs to get that high. When it hit 650, I stopped taking iron supplements and it dropped to 420 a year later. As for my RLS, it had zero effect. If I forget and am late with my meds, my RLS is still severe.

I am taking iron daily, only for the past few months.
No idea if there is yet any change and unaware of any affect on rls symptoms.

Hi

I take Ferex 150 Iron supplement capsule every other day with l000 mg of Iron...My ferrin level is consistent @ 162 or 167 in the past two yrs.
Of course, i am on meds to control the RLS as well....and YES i do get break-through occasionally...When that happens, I massage my legs, feet & walk or use ballet up & down with my feet movements...I count l00 times & sometimes this helps..Hope this helps some... Restless

So far that's not a ringing endorsement for oral iron :-\

My ferritin was always at a decent 170-ish. Then about six months ago it was 57, no idea why. That was when I started the oral iron. I have a blood test scheduled for Wednesday to have it checked.

Just to note..... When I typed this post the predictive text changed ferritin to terrorism..... lol.... Not too far wrong.

i trialed sagobion 2x/day for 3 months. my ferritin went up from 33 to 54.....

my rls got worse in the 3 months from pain and not sleeping. went straight for IV iron afterwards

Polar Bear wrote:My ferritin was always at a decent 170-ish. Then about six months ago it was 57, no idea why. That was when I started the oral iron. I have a blood test scheduled for Wednesday to have it checked.

Just to note..... When I typed this post the predictive text changed ferritin to terrorism..... lol.... Not too far wrong.

Best thing I read all day!

I got my blood test results today and in six months of taking oral iron my ferritin has gone up from 57 to 64. Not a lot.

Why, after years of sitting at average 170, it should plummet to 57 baffles me.

Polar Bear wrote:I got my blood test results today and in six months of taking oral iron my ferritin has gone up from 57 to 64. Not a lot.

Why, after years of sitting at average 170, it should plummet to 57 baffles me.

Current thinking is that the ferritin in the BLOOD comes from cells that have broken apart. Some cells break apart by circulation. The normal ferritin test actually measures the ferritin in the serum, not blood. IE red blood cells routinely die and spill their contents (including ferritin) into the serum (the part of blood left over after the cells have been removed). Inflammation of ANY type will cause cell disruption and result in ferritin being dumped into the serum. Ferritin is falling out of favor as a test for iron status because there are so many situations that cause it to increase that are not related to iron status. Soluble Transferrin Receptor is gaining interest as a better marker of body iron status. Hopefully in not too many years we won't be measuring ferritin any more. It is a poor test of iron status and it looks like a better one (soluble transferrin receptor) is starting to be used. But we still need a better test of BRAIN iron.

Thank you Holland.

Thanks, brain iron is a difficult concept. Reducing inflammation is important for so many things.