Iron/ferritin deficiency

[marjolaw]

Hello!

Does anyone know how long it might take for ferrous sulphate 200mg 2x

to have any effect on fairly severe RLS symptoms if it is caused by iron deficiency?

Cheers!

[Hidden]

Hi Marj, the iron could work in as little as one hour, though I prefer 25 to 50mg of ferrous bisglycinate. I take it before bed and it relieves the RLS in one hour for the night. Please take the iron on an empty stomach with some type of vitamin c before bed. If it doesn’t provide immediate relief then it could take several months to see a significant rise in your ferritin. See the below links.

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

healthunlocked.com/rlsuk/po...

[s_gc]

Hi @marjolaw, I am not sure about ferrous sulphate but when I had episodes of fairly severe RLS (i.e. for 2-3 weeks not sleeping more than 3-4hours and not in a row) and I took ferrous fumarate 210m x3 (with 67mg each of iron), it calmed it down straight away. So at least I could get more sleep c. 6hours even if broken up.

Since then however my iron and ferritin levels have stayed way below the 100 despite taking the iron supplements (I changed to ferrous bisglycinate which is recognised to be much more bioavailable and also iron patches and king of every other day too). They remain closer to the very low mark of 20. Thanks to what I think is another condition altogether (pain around the glutes area as well as pain of my Tensor Fascia Latae (TFL) muscle that keeps me awake or wake me up at night) I don't seem to have the RLS symptoms at least on the lower legs level, or if I do they are quite mild and a spray of magnesium usually calms it down too.

Hope that helps.

Sophia

[SueJohnson]

It usually takes several months. Ask for a new full panel blood test after 3 months. I assume you had one? What was your ferritin?

[ChrisColumbus]

Depends on your current iron levels and how well you metabolise the supplement. It can take weeks or months. But do you even KNOW you are iron deficient, I.e. have you had a recent full iron panel blood test, taken as early as possible in the day after overnight fast and 48 hours after taking an iron supplement? What was your Serum Ferritin level?

[ChrisColumbus in reply to ChrisColumbus]

Low iron is likely, but it MAY not be the cause of your RLS anyway. What other meds are you on: statins trigger my RLS, and many other meds are triggers too . Or you may be reacting to a food intolerance: for me, too much sugar or the artificial sweeteners in diet drinks/foods are major triggers. Or you, like me, might need Magnesium rather than Iron.

[Joolsg]

Do you know your RLS is caused by iron deficiency? Have you had full panel fasting bloods?

Oral iron supplements can take months/years to raise serum ferritin above levels that stop RLS. You may not respond to iron - I had an iron infusion & my s. Ferritin went to 785 but it made no difference to my severe RLS.

However, odds are in your favour because the majority do see an improvement

Iron infusions raise levels more quickly ao if you qualify, you could ask for a referral or write direct to your local hospital haematology dept.

[Graham3196]

Hi Marjolaw We are in the same age group and understand that there is no time for mucking around with iron tablets. The best path for you is to get an iron infusion as soon as possible. Check with your doctor to make sure you dont have any condition that prevents you having an iron infusion. Most doctors are afraid of iron infusions for RLS without any good reason. If a doctor tells you the risk is too high ask him what the risks are. I got stupid answers like "all injections carry some risk" and "anything that breaks the skin risks infection" Explain that lack of sleep carries many risks. Iron infusions are everyday procedures for several conditions and hospitals do dozens every day, just not for RLS. My daughter had severe RLS and was 100% fixed one day after one infusion. I had an infusion after a long battle with GPs and it was a complete fizzer - no benefit. My daughter's an exception but so might you be and the only way to find out is to try the infusion. An infusion doesn't help everyone but apparently 50 to 60% of patients get some relief and quite a few get complete relief.

In the UK there are several places to get an infusion. I think its much easier if you have the money to visit a Harley Street specialist but otherwise persist with your doctor and try other doctors until you find a cooperative doctor.

Where do you live? Some one here might suggest a doctor.

Good luck Graham

[SueJohnson in reply to Graham3196]

Unfortunately it is just some that get complete relief.

[Graham3196 in reply to SueJohnson]

If it was only 5% who got complete relief I would still have battled to try it out. In Australia the cost seems to be the main problem. It cost me about AUD650 I think. There was a forum member from the UK who spent a bit more with a specialist in London. I cant remember the numbers.

The cost in lost days of my life was huge as it is with most patients. In the last couple of weeks I had a few dinner parties and then a taste of what life used to be like with active RLS. I have now had 5 days of relaxed sleep. Interestingly the last 5 nights I also have not had an aching pain down the front of my shins. It doesn't feel anything like RLS but I have to wonder if there is any relationship. I have assumed it was arthritis or something I just had to learn to enjoy.

[Amrob in reply to Graham3196]

Hi Graham, that's curious. I've had 3 or 4 iron infusions and have never paid a cent. This has been as an outpatient in a hospital and at a clinipath centre. From memory my sleep specialist made the referral for most, if not all, however one may have been via my GP. I'm just wondering what the difference was with your experience as it would be under Medicare (as opposed to state-based or via private health cover).

[Graham3196 in reply to Amrob]

Hi Amrob I am curious to find an explanation for several GPs telling me that an iron infusion was not in their "book" as a treatment for RLS and therefore they couldn't do it. Perhaps a sleep specialist has a different book.

The only sleep specialist I have seen was at a major public hospital who turned out to be ONLY interested in convincing me that I had significant sleep apnea and so I should spend $1000 to get a pump and have it fitted. I pointed out that I attended their sleep study specifically for help with my RLS and walked around their lab for 6 hours with RLS instead of sleeping. They assured me that I slept for more than an hour and that was plenty for them to prove I needed a pump. I was a bit grumpy but I tried to be polite when they admitted they did nothing for RLS. A waste of two days. From that time I have regarded sleep specialists with the same respect I feel for car sellers, real estate agents and drug dealers. I must try harder and make some inquiries but from what I have read in this forum most of them just reach for a packet of pills and tell you how to misuse them.

[Amrob in reply to Graham3196]

That sounds like a very disappointing outcome for you Graham3196. Fortunately i have both a progressive GP and a progressive sleep specialist.

My sleep specialist in particular has been happy to facilitate me trying iron infusions, several opioids including buprenorphine, DAs, gabapentinoids, medical CBD, transcranial magnetic stimulation...you name it!

On a slightly separate note, i was interested to read of your daughter's experience with iron infusions. I have not pursued an iron infusion for my young son because iron infusions didn't make a significant difference for me, but i see now from your family's experience that it doesn't necessarily follow... Thank you for sharing that.

[Graham3196 in reply to Amrob]

Good luck for your daughter. I think we are all so different that we should try everything that's worked for someone else just in case it our "personal magic cure". Your medical team sounds like the best you could have. By the way where in Aus do you live?

[desparatedenise]

I take 200mg three times a day. It worked pretty quickly to get my ferritin levels to 150. When I tried to reduce to x2 a day, my legs got worse again. Back on x3 a day and my ferritin levels are 249. I also take Sinemet ( carbidopa and levodopa) recently prescribed by neurologist. He has offered me an iron infusion if they don’t work, but so far, so good!

[Graham3196 in reply to desparatedenise]

Wouldn't it be a good idea to try the iron infusion and perhaps get an almost permanent relief without having to take any drugs?

[desparatedenise in reply to Graham3196]

yes, it sounds as though that might be a better option. I will contact the neurologist.

[Hidden in reply to desparatedenise]

Denise, the iron should help you a lot more if you only take it at night, about an hour before bed, on an empty stomach. Think about switching to ferrous bisglycinate. Since you find your RLS is worse if you drop down to 2x a day I doubt your higher ferritin is helping you whatsoever. Our RLS brains just need a little extra free-floating iron at night. And if you only take it at night you can probably get away with only one or two tabs. Also, stopping all eating after a somewhat early dinner may help too. Here’s one of my favorite iron stories

healthunlocked.com/rlsuk/po...

[SueJohnson in reply to desparatedenise]

Taking iron more than once a day actually reduces its effectiveness.

[desparatedenise]

thanks, I’ll try taking all iron at night instead of 3x a day.

[Hidden in reply to desparatedenise]

Denise, I could be wrong, but I don’t think a neurologist will prescribe an infusion for someone who is already above the average range of ferritin. People on here hope and pray they can get their ferritin up to 250 with oral iron (or infusion) because they have been wrongly convinced on here, and else where, that it will make a world of difference to their RLS. Has it made a world of difference to you? Can you stop the daily iron now that your ferritin is 249? Can you lower the amount of the opiate you take? I think not. This plays out over and over and over again on here, yet people are still advised to get their ferritin way up there. Except for me, no one on here advises that by just taking iron at night, regardless of how low (or how normal) their ferritin is, they can get relief that very night. Many people discovered this on their own as you can see from links in my last reply to you.

Ferritin stays constant through-out the day. If it’s 250 in the morning it’s gonna be at, or near, 250 at night. So if low ferritin had a lot, or anything, to do with RLS, then the person should have symptoms 24/7, not just at night. Serum iron on the other hand does have a circadian rhythm. It plummets at night. Since we with RLS have such little brain iron reserves we rely VERY heavily on that serum iron. When it drops at night we get RLS. That’s why I say take all the iron at night.

There’s another person who was in your exact shoes on here. Let me see if I can find her.

EDIT: Here’s a post from the person I’m thinking of.

healthunlocked.com/rlsuk/po...

And here’s a reply from her to someone else’s post. It’s your exact situation:

Marlayna67 2 years ago. I took iron at night (around 8 pm when iron levels drop) with a probiotic for six months. I raised my ferritin from 7 to 240. Now the docs are asking me to stop taking iron so I did. Although I had complete relief from RLS for these six months, it started creeping back within one week. No pun intended. I may have to keep up my protocol and ignore the doc advice.

Denise, if you ask your neurologist for an infusion they’re not only going to tell you no, but they will likely advice you to stop taking iron altogether

[SueJohnson in reply to Hidden]

Actually ferritin is lowest in the morning which is why it is advised to take the test in the morning.

[Hidden in reply to SueJohnson]

What’s the swing - a point or two? Plus, that means that RLS should be worst in the morning if ferritin has anything to do with RLS.

[Graham3196 in reply to Hidden]

There is evidence that SOME people need to reach 300 before they benefit from an infusion or other increase in iron. There is said to be evidence that raising the ferritin level to above 100 helps 60% of RLS patients get some relief. To get to 300 by oral supplements is a very long process compared to a half day for an infusion. It is probable that you will not be able to get to 300 orally so why tolerate hundreds of nights of lost sleep due to RLS to find out that increasing your ferritin level won't help you and you should look to other treatments such as diet.

Raising my ferritin to 354 didn't help me but that doesn't mean it wont help anyone else. I dont want to labour the point but my daughter's RLS went away the day she had an infusion and has stayed away for the last 3 or so years. In my mind that makes it a worthwhile treatment to try.

[Hidden in reply to Graham3196]

RLS should go away the day of the infusion as does a condition called Pica for which infusions are also given. Was your daughter anemic? Did the RLS ever return? But it doesn’t work the first day, nor do any doctors claim it will. Nor do they explain why it takes weeks and months. Denise’s iron is already at 249 and the oral iron is helping except when she leaves one of the three tablets off. How much you want to bet it’s the evening one she leaves off?

[Graham3196 in reply to Hidden]

It's definitely some peoples experience that an infusion helps them. Doctor Buchfuhere advocates infusions. Why not give it a try?

[Hidden in reply to Graham3196]

Because the oral iron (as horrible a form as it is) is helping her and she will probably get to 300 on her own. And she will still need to take oral iron. Was your daughter anemic? Did her RLS ever return.

[SueJohnson in reply to Hidden]

Whoops - my bad! Ferritin is lowest in the evening.

[SueJohnson in reply to Hidden]

I can't believe I have been saying this for 2 years on this and on another forum in all my answers on how to take the test which I must have posted perhaps a 1000 times and you are the first that caught it. Thank you so much !!!

[Hidden in reply to SueJohnson]

Do you have an article. I could not find one.

[SueJohnson in reply to Hidden]

No - I have just been saying this in my replies to people saying that they should take the test for ferritin in the morning when their ferritin was lowest and I should have been saying when it was highest.

[Hidden in reply to SueJohnson]

This article indicates there is no rhyme or reason to variations in ferritin at different hours of day or between days. However, there does definitely appear to be a stable diurnal variation in serum iron. Ferritin has little to nothing to do with RLS unless we’re talking about sustained Ferritin of around 600. Then there does appear to be some decent spill-over of iron into the brain, maybe. I’ve read the studies done with RLS and iron infusions. They’re small, few and bias. Anyone claiming an improvement of 40% or more in symptoms gets thrown into the infusions provide substantial relief basket. I want near 100% relief without the need for medication then I would put the patient in the substantial improvement basket. And why does it take weeks or months to see even that 40% relief?

labme.ai/how-ferritin-fluct...

Here’s a summation of results from RLS and infusion clinical studies (where there’s a control placebo group).

cochranelibrary.com/cdsr/do...

[SueJohnson in reply to Hidden]

I don't see anything in that article that says "Ferritin has little to nothing to do with RLS unless we’re talking about sustained Ferritin of around 600. " In fact it said that iron improves RLS without any reference to what the ferritin was. And improving ferritin to 100 or more helps 60% of people with RLS, not 40%. sciencedirect.com/science/a...

[TeddiJ in reply to Hidden]

Hi, SalemLake! I hear you on the iron and it is oh-so-important. I just checked and it looks like she-Marlayna-is taking Oxy, too. Disappointing for those of us looking to get off drugs.

[Hidden in reply to TeddiJ]

Oxy is for neck pain I believe. She got relief from RLS before Oxy with the iron.

[Hidden in reply to TeddiJ]

Here is what she said a year ago:

Hi all. I thought I would pop in and share some good news. I have refused to take all the drugs that have been offered to me. But even experimentation with lower levels of hydrocodone and OxyContin have been uncomfortable enough that I refused to go in the opioid direction. What has worked for me and continues to work for me is taking chelated iron and not eating sugar. I have a very severe case of RLS and it’s in my arms and shoulders as well as my legs.Taking 18 mg iron around 7 PM at night has done about 95% of the trick for me. I hope this helps someone out there as I found this information on the site and it has helped me tremendously.

[TeddiJ in reply to Hidden]

Thanks-yes-I saw that. But then I looked at a more recent post about the oxy. It is still very good news but just not quite as compelling (for me) that she still went to see Dr. B, etc. Anyway, thanks!

[desparatedenise]

thank you for your advice