Iron levels.. Again!

[Scubaholic]

You gave me very helpful advice after blood test iron panel back in February when results were: units microgm\l

Ferritin 77

Iron. 28

Transferrin 2.46

Transferrin saturation 45%

Total iron binding capacity 62

and I've been taking iron supplements as you advised alternate days since then.

My blood tests were repeated earlier this month and ferritin levels improved, now 112

Transferrin saturation has lowered now %37

Overall serum iron slightly lower at 23

Total iron binding 63

Transferrin about the same

All fall within NHS normal ranges

So do I continue to take the supplements?? Is my ferritin likely to get any higher?

My restless leg symptoms are not bad ATM, some symptoms most nights but settle down fairly quickly with some stretches. It's hard to say if they have improved as so variable- had definitely been worse than this when I first signed up to health unlocked though.

Thanks so much

[SueJohnson]

I would continue taking the iron. Great that your TSAT is now lower.

[Joolsg]

I agree with SueJohnson. Keep taking the iron. Professor Toby Richards talked at the RLS-UK AGM and said it's almost impossible to overdose on oral iron.Many people need serum ferritin above 200ųg or 300 before their RLS settles.

[Scubaholic in reply to Joolsg]

Thanks very much, really appreciate the advice- but does this mean taking it permanently?- I've been taking it for over 7 months now.. and when do I ask for another iron panel ?

[Joolsg in reply to Scubaholic]

With RLS, full iron panel blood tests should be repeated at least every 6 months. Your RLS symptoms seem to have improved as your brain iron levels increase. However the top experts do comment that RLS patients seem to lose iron stores very quickly and there's often no obvious reason. If the iron is keeping symptoms at bay, then keep takung it.There are many people on here who take ferrous bisglycinate every night.

[Hidden in reply to Scubaholic]

Scub, are you taking the iron on an empty stomach, about two hours before bed? And not eating anything after an earlyish dinner? Eating at night is a trigger for some. The iron at night actually provides immediate relief for many on here. Me included.

I believe that ferritin has little, if anything, to do with RLS, unless you’re anemic. Anemia can definitely worsen symptoms. It’s all about something called “serum iron”or “labile iron” which has a circadian rhythm, and plummets at night, and we get RLS, because our RLS brains are pretty useless when it comes to storing iron for a rainy day. So we rely VERY heavily on that free-floating serum iron in our blood stream. Iron is the grease and glue that keeps our lousy dopamine receptors chugging along. It keeps the whole world’s receptors chugging along. Also, that unused pool of dopamine in our brains plummets at night. That doesn’t help matters either. 🥺 By day we’re mostly fine, even though we have lousy dopamine receptors 24/7, but by night, we just can’t handle that drop in serum iron and dopamine.

There is no magic number with ferritin, where RLS disappears, or even improves. The top RLS experts recently did a clinical trial comparing oral iron to an infusion. Even though the infusion group’s ferritin was on average 10x higher at the six week mark, than those on oral iron, there was no greater relief. Both groups had a “significant” reduction in symptoms. These were anemic patients with RLS, btw, so there should be improvement across the board. The oral iron group actually reported a somewhat greater reduction in symptoms. These experts should have highlighted this fact, as we should on here. FERRITIN is IRRELEVANT. 30 ferritin versus 300 ferritin = same reduction in RLS symptoms. So no, don’t take iron just to get your ferritin as high as possible. No, you don’t need to have a precise measurement of your ferritin every three months and stop eating steak 48 hours prior to blood draw. I never heard such a crazy thing in my life. A steak dinner should have very little, if any effect, on a next day blood draw/ferritin reading. If 30 versus 300 doesn’t matter why should 112 (your last reading) versus 113 matter???

[WideBody in reply to Hidden]

I do think taking iron earlier in the evening, on an empty stomach is important. Taking Iron at bed time does not really help my RLS. Taking iron 2-3 hours prior to bed certainly seems to have an effect. Doing that on an empty stomach is the hard part. I am a night time eater. I need to change that.

[Hidden in reply to WideBody]

Does that mean you can do without the dipyridamole ?

[WideBody in reply to Hidden]

Sadly, no. It may be a placebo effect, but dip helps.

[Hidden in reply to WideBody]

You know the drill, iron first. Then if you go to bed and still have some RLS, take the dipyridamole

[Scubaholic in reply to Hidden]

Thanks for all that- I have actually been taking it in the morning on empty stomach as I don't do breakfast until I've walked my dog,! And, like wide body below, I am an evening nibbler 🙄... But I will try switching! Do you take it alternate evenings?- that was the advice I was initially given as there seemed to be some evidence taking it daily inhibited absorption/effectiveness? ...

And to be clear I am not on any other meds- I assume these improvements are either in people not taking anything else ?

Thanks for taking the trouble to reply🙂

[Hidden in reply to Scubaholic]

Mornings!!???! No, never, if you want that immediate relief. Mornings are fine if you’re trying to raise ferritin, and yes, every other day “might” allow for fractional better absorption, but if you want relief every night then you really need iron every night. It’s all the better that you’re not on other meds. I’m expecting great things for you now. See below:

healthunlocked.com/rlsuk/po...

[WideBody in reply to Scubaholic]

I take iron everyday. The doctor explained to me, taking iron every other day increases the percentage of absorption, but not the total amount of. Let’s do some maths.

If I take 65mg every day but only absorb 50 percent, I get a total of 32.5mg of iron every day. Or a total of 65mg every two days.

If I take 65mg every other day, I absorb 75 percent, I get a total of 48.75mg every two days.

I am making up the absorption numbers for the sake of easy math.

This doesn’t even take in to account the benefits of taking iron for my RLS, which I know works.

BTW, I took iron every morning for a year, got my ferritin to over 200 and it did nothing for my RLS, the nurse told me to stop. It took 18 months for my ferritin to fall from 207 to 30. That’s when I got an infusion and started learning about the correct way to take iron.

[Scubaholic in reply to Hidden]

Ah I've just seen Sue's reply in the thread explaining the taking it every night if it helps on those nights..🙂

[Hidden in reply to Scubaholic]

Yes, we need to afford people this opportunity to see if they’re an immediate responder.

[Hidden in reply to Scubaholic]

Any luck Scub?

[Scubaholic in reply to Hidden]

Hi there and thanks for asking. The jury is still out- first 2 nights were great and I thought it was actually going to work but since then results have not been consistent so it may have been that these were just 2 random good nights .. my RLS likes to do this!- tricks me into thinking I've found a fix..then reappears. Same with potential triggers- alcohol can make it worse... But not always!!I'm finding it difficult to work a good time to take the iron in the evening- my meal times are variable and can be late so can't always take it on an empty stomach too.

But I'm going to continue- even if it doesn't work directly there's still the chance that increasing my ferritin levels longer term might help🙂

Thanks again

[Hidden in reply to Scubaholic]

How many mg are you taking? A little food in stomach won’t matter that much. You have to tell me what happened on good nights then bad ones. What time did you take iron, how much, then what time did RLS kick in and for how long.

[Scubaholic in reply to Hidden]

70mg plus vitamin C. Timing varies, if I'm going to eat later I will take it earlier around 7pm, if I eat by 8\8.30 then I'll take it at 10.30.I generally wake up after a couple of hours sleep with hot and restless legs. Sometimes several times during the night but tbh I have it very mild compared to many on here. Generally if I get up and do some stretches and pacing and splash cold water on my legs it settles down. It's only the nights where it persists or wakes me multiple times which are hard to handle.

[Hidden in reply to Scubaholic]

I’m not sure the iron is helping you? Or at least the iron at night trick. Yes, if you take the iron at 7pm then you’re probably going to wake up around 2 to 3am with RLS. If you take the iron at 10:30pm then you should be good for whole night essentially because serum iron will begin to slowly rise on its own after midnight and by around 5am to 6am there should be no more RLS. And your 10:30 iron supplement should cover you during the worst period which starts around 11:30 and goes to 4:30. Not that you can’t get RLS before or after that window it’s just that’s really kind of the bewitching hours. Serum iron is supposedly absolutely lowest at midnight. So if you go to bed right at 10:30 when you take the supplement and wake up at 11:30 I can understand that because the supplement has not been fully absorbed or reached it’s peak effectiveness yet. Well, keep me posted.

[rlsunlocked in reply to Hidden]

What do you think is the optimal serum iron, according to your thinking?

[Hidden in reply to rlsunlocked]

There is no magic number, Unlocked. Of that I am sure. Anemia, or even VERY low ferritin, can trigger RLS if you are predisposed. Even raising your ferritin into the 30s will greatly diminish or even eliminate symptoms if you’re anemic. If ferritin were a significant factor then RLS should be present 24/7/365 for those who have very low ferritin. RLS, for the vast majority of us, occurs at night, when something called serum iron plummets, as well as that pre-receptor pool of dopamine.

[rlsunlocked in reply to Hidden]

Ok, sorry, I was not referring to ferritin, but the "free iron" or whatever one call it.

You know what I mean?

Do you have any idea about "that" number specifically?

[Hidden in reply to rlsunlocked]

I actually don’t and I probably should. I just know that serum iron aka labile iron fluctuates between day and night.

[rlsunlocked in reply to Joolsg]

Interesting, what does "overdose" mean in this context?

[Joolsg in reply to rlsunlocked]

Raising levels above 1000ųg/L and heading into haemachromatosis levels I assume. His talk will be on the RLS-UK website soon.

[Hidden in reply to rlsunlocked]

That was actually Jools, not me, that used that term. I’m the iron at night trick proponent.

[rlsunlocked in reply to Hidden]

oh yes, things get confusing..😀 I just hijacked this thread, because I have seen your posts about iron, and I was curious about it, if there is a specific number you are trying to get

[Madlegs1]

If your symptoms are intermittent,then look at triggers.

Especially food or drink.

Keep on with the iron supplements.

[SueJohnson]

I would suggest doing another full iron panel in 3 months to see where you are.

The taking it every night is to see if you are one of the ones where it stops your RLS completely for that one night only. If so, continue to take it every night. If not take it every other night.

[Munroist]

I raised my ferritin from 70 to 171 using iron bisglycinate and it might even be higher now. It’s hard to be 100% certain but I felt that my RLS symptoms moderated a bit and I got more sleep but there was no dramatic change. I’d continue, you can’t overdose on supplements especially if taking the recommended amount and good iron levels help many other things e.g. fatigue and concentration. If you get no further benefit it’s easy to stop and then if you find things getting worse again it might be a sign that it was helping.