Brain iron vs Blood iron

[SkyCop]

Has anyone read that in RLS patients brain iron can be lower than indicated by blood measurements? I read a study out of Quebec about the gene we carry causing a malformation in the brain that makes it harder to uptake the iron.... So blood levels are not accurate in showing brain anemia. My RLS totally went away after Covid hospital iron infusions but now that I'm recovered I can't qualify for any more and it's torture. Nothing really helps. I would love to find a specialist willing prescribe another infusion.

[SueJohnson]

The measurement you need for RLS is your ferritin. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. It is likely that yours is not over 100 with your serum iron so low. If you haven't had your ferritin tested when you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is not above 100 or your transferrin saturation is not between 20% and 45%, post back here and we can give you some advice. Who is saying that "the cut off to qualify for infusion is 12?" That may be true for anemia, but you may need it for RLS and that is a whole different ballgame. It sounds like your doctor does not know much about RLS. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

[SkyCop in reply to SueJohnson]

Yes! I agree! I stop my iron supp a week before each blood test. But where I live hematology & neurology point fingers at each other about RLS. I showed them the mayo study and several others from Boston & Quebec.... Heme says an iron infusion is against the "standard of care unless I am anemic. " Neurology says they don't deal in infusions even for RLS & I need to speak to heme if I want that..... Then upped my requip but that just gets me to augmentation faster and you know going off meds to reset augmentation is hell.... I usually have to do it once/year but Im already having worsening symptoms so this new large dose is not going to be sustainable if I have to do a 30 day med purge every 60 days. Did your doc give you infusion for ferritin under 100? What specialist was it and where? I would travel & cash pay.

Ferritin

[SueJohnson in reply to SkyCop]

WOW that is really low. Yes an infusion might definitely help It sounds like you need to change doctors. Where do you live. I might be able to give you the name of a doctor. No actually my ferritin was 559 and I was told to stop taking iron tablets. Meanwhile take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day at the same time but no sooner than 24 hours or its absorption will be less Take it at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you have problems with constipation switch to iron bisglycinate. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. Also antacids interfere with its absorption. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets. And do let me know where you live.

[SkyCop in reply to SueJohnson]

Hi! I live in New York. I have been to countless docs.... But none willing to give infusion for RLS. My iron has always been this low so I've been on tablets my whole adult life but it still never raised it until I got the infusions during my Covid recovery for my cellular O2... It was just a coincidence it solved my RLS. Since then I've been trying to get a doc who will do another infusion. I have tried to get into the johns Hopkins RLS clinic for about 8 years but always get shot down. I will go anywhere I can find a specialist who will listen to our iron research and be willing to do an infusion. Where do you live?

[SueJohnson in reply to SkyCop]

The following are listed in the Restless Leg Syndrome Foundation:

 David J. Dickoff [phone] Yonkers

Jennifer Durphy [phone] Albany

Ana C. Krieger [phone] New York

Harini Sarva [phone] New York

[SueJohnson]

What medicines are you taking for your RLS? You list both gabapentin and pregabalin and you list both requip and requip XL and you also list opioids on your profile.

[SkyCop in reply to SueJohnson]

Hi! Yes! I have tried all of these. I take requip and requip xl nightly. I need to get up 3-4 times to take more. it's not great but it's better than the other meds .... They did nothing. I was on gaba for a year with no relief before I moved to requip. I get augmentation with requip though, as I'm sure you know, so every year I do a 30 day purge. .... then I restart the cycle. Until I discovered iron infusion it was the only thing that helped. Have you had better luck with something else?

[SueJohnson in reply to SkyCop]

How much gabapentin were you on?

[SkyCop in reply to SueJohnson]

Bucket loads.

[Hidden in reply to SkyCop]

Hi Skycop, you’re young to have such severe RLS. Are you taking any meds that might be making symptoms worse such as a SSRI or HRT? Or a supplement like melatonin?

[SkyCop in reply to Hidden]

No, I'm aware & careful about medication affecting my RLS. it's genetic for me and my dad, grandpa, brother, sister & husband are doctors many nurses in family.... Sadly no one specializing in RLS... But they have helped me know what to avoid when possible. I have had to take Benadryl a few times for allergic reactions and wow,. That is horrible for RLS. Having severe RLS is common in my family. 7 night/ week. Like ants crawling on my feet all night. Large jerky movements. Sometimes in all 4 limbs. Often starts around 4pm goes til early morning. You?

[Hidden in reply to SkyCop]

Yes, mine is genetic too, so I think. It was mild and infrequent since high school and never knew it was a thing. Didn’t even bother me during pregnancy. Looking back I can see that Tagamet would trigger it in my 30s, but short lived. I was about 40 when I thought taking a little Melatonin would be a good thing. Instant severe RLS - the devil incarnate. Didn’t make the connection. After two sleepless nights I did some research on the internet and read to “just take some iron at night, there’s something about that free-floating iron that helps.” So that’s what I did, only I bought some “Gentle Iron” because I have a delicate GI system. Worked that first night and every night thereafter. I ran out one time and since the health food store was closed I bought ferrous sulfate. I figured I’d rather be constipated than not sleep. Took one and went off to bed about an hour later. The RLS was still there. Took a second one and still no go though I did eventually fall asleep. Then I upped the melatonin and the gentle iron no longer worked. Back to the internet I went only to find out that melatonin is a big no. The day I stopped the melatonin is the day my RLS went silent …really silent. I believe I had unknowingly up-regulated my genetically lousy D2/3 dopamine receptors. After all, that is what RLS is at it’s core, for all of us, it’s just a matter of how lousy. And yes, we have low brain iron - I accept that as fact even without verification via MRI, etc.

Ever wonder why RLS occurs mainly at night? It’s because serum iron (NOT ferritin) plummets at night. Since our brains are unable to store much iron we rely very heavily on that “free-floating” iron in our blood. When it drops at night (lowest point is midnight) we get RLS. Iron is the grease and glue that keeps everyone’s dopamine transport system chugging along only the non-RLS world that has normal size and number of dopamine receptors as well as plenty of brain iron are not bothered by that nightly drop in serum iron.

So naturally my recommendation is for you to take about 50mg of ferrous bisglycinate on an empty stomach an hour before bed. Take it before the DA and see if maybe you won’t need as much??? I’ll try to send some links your way of people who have had similar luck taking iron this way.

Sher is great: healthunlocked.com/rlsuk/po...

This too: healthunlocked.com/rlsuk/po...

[SueJohnson in reply to SkyCop]

And how much was that since each person's definition of bucket loads is different?

[SkyCop in reply to SueJohnson]

Usually about 8-12 fairly large capsules/ night. Didn't work.

[SueJohnson in reply to SkyCop]

Can you check how many mg the capsules were. And taking them all at the same time reduces their effectiveness. It's possible they would work if you took the right amount and in the right way, so it is worth checking.

[CsiguZ]

There is a so called blood brain barrier, a kind of filter, which prevents to enter all the content of blood into the brain in order to prevent it. One hypothesis is that the disfunction of this barrier prevents to enter all the iron into our brain.

[WideBody]

There is some great information above as someone who fought a similar battle. Did you check your Vitamin D levels? I was always low. I added a large dosage of Vitamin D to a fatty meal. Vitamin D blocks Hepcidin. Hepcidin blocks iron absorption. Vitamin D helped me increase my ferritin.

I recheck my Vitamin D and Iron levels every 4-6 months. Lately I am been using Liquid Ferrous Sulfate every night, on an empty stomach an hour before bed. I also add some Vitamin C to help absorption.

Good Luck!

[SkyCop in reply to WideBody]

Yeah, I take D3 and vit C everyday. No matter what I do my iron is always low but not below the anemic threshold so the docs won't approve an iron infusion. Would love to find a specialist who will listen to our research here and be willing to do an infusion. Have you had luck with this?

[CsiguZ in reply to SkyCop]

It’s worth to check your vitamin D level even if you take it every day. Last summer I checked mine and after taking 2000NE every day since covid started and I had extremely low vitamin D level even in summer.

[Graham3196]

The "S" in RLS is for syndrome. Syndrome means there are some people, or a lot of people, with similar symptoms but the medical profession still hasn't worked out a convincing reason for the symptoms. We have a few hypotheses but probably can't prove them without killing the patient. Hence we have a big list of things that relieve RLS or even give us a long term cure. What fixes me may be of no benefit to you. It might even make you worse!

In my case I have had RLS forever ( about 77 years) but it gradually changed from an annoyance that was relieved by taking a teaspoonful of sodium bicarbonate every night before bed to a monster that gave me 2 hours sleep 7 nights a week. My job depended on driving so I didn't need suicidal ideations to threaten my life - I was about to kill myself or someone else in a car crash. I tried several drugs that all had serious unacceptable side effects. I stopped the sodium bicarbonate because it had become useless.

Because of the sodium bicarbonate I always suspected RLS was related to digestion in some way. I saw a suggestion that gluten was a problem so I avoided any food with measurable gluten. Eliminating gluten gave me some welcome relief which almost surprised me. The RLS was still unacceptable but there were nights with no RLS so it looked promising. Some months later I rang some experts at Monash University and the best they could suggest was that since it reacted to gluten it might be related to FODMAPS. That was not a formal prescription but just a guess that it might be worth my while testing. That was good advice and I found a remarkable improvement. Gradually I whittled other foods away. I found lactose and caffeine contributed to RLS so they went. I found that decaf coffee and tea still contained some caffeine. Now I drink water and it does me no harm. Ban chocolate! There are a range of foods that contain FODMAPs and you can see them on the Monash University web site. You can invest a few dollars in a phone app that helps you manage your FODMAPs

I tried an iron infusion and it didn't work for me. All three of my daughters have inherited the wrong genes and get RLS. One had an iron infusion and the RLS disappeared that night and hasn't come back after 5 years or so. The youngest had an infusion that did nothing and the third has mild RLS so isn't interested in an infusion yet I went to five local GPs who said that an infusion was not a recognised treatment for RLS so they wouldn't prescribe it. I rang another dozen who also said no. Some just wanted to stick to the book for legal reasons, some argued that they were experts and knew what to do for RLS and some presented stupid reasons like "every injection means puncturing the skin and must be considered risky" Sounds pretty ridiculous after 4 billion people are forced to have three or four injections for Covid-19. (I'm not anti vax as you can tell and I was first in the queue for Covid innoculation) I went to my daughter's GP and she was a great help and rang around specialists to find one who was willing to supply. The infusion raised my ferritin from 115 (I think) to 350 with no benefit.

Since then I have been put on a proton pump inhibitor (PPI) which is said to lower ferritin so I am tracking the ferritin level as it reduces with time. I need the PPI to protect my esophagus from acid burns which apparently promote esophageal cancer. 'Tween a rock and a hard place.

An excellent feature of the Australian health care system is that pathology is generally free to the patient so I can afford as much as I NEED to be informed of any changes.

I am going for my regular pathology testing next week. The RLS seems to be more sensitive to diet now than it has been in the past. IT used to be that if I was strict in my diet then I could have one meal without suffering symptoms, Now if I "cheat" , just once, I can get a brief return of mild symptoms for two or three nights so I'm dreading that I might find another food to cut out. The diet's not much fun really but I just remind myself that last night I had 8 hours sleep with no trace of RLS

I would recommend anyone with RLS to try eliminating FODMAPS and gluten. There are still plenty of things you can eat and its free to try the diet. Eliminating gluten had a benefit within a week and FODMAP took about 12 weeks to have a full effect. My only medicine now is 1000mg of Panadiene at night for leg pains which I think are caused by arthritis.

My other recommendation would be to start looking for an infusion. It might take months to get one so start looking now.

If neither of these help then you haven't lost much and at least you know that you have tried some treatments that don't involve risky drugs.

I wish you lots of luck.

[WideBody]

I’d like to answer the original question. Yes, brain iron deficiency is real and has been studied. For a great information video

youtu.be/VVlQKOOrRVs(Not working as expected?)

It talks about iron in the brain. Circadian rhythm of iron is important to know. A morning fasted full iron panel is required. Stop supplementing before the test 48 hours. I go a week, I have been burned. Ferritin is important but some experts think Transferrin Saturation Percentage is more important. If TSP is under 20 percent an infusion should be considered. Learn all about how to balance your iron. Check out the flowchart in section 8.3

sciencedirect.com/science/a...

I had something called iron deficiency without anemia. Low iron stores. You are right, Doctors only look for and treat anemia. I reported over 15 symptoms of anemia over the years neither I or the Doctors ever noticed until afterwards.

Good luck

[SkyCop in reply to WideBody]

Any ideas about getting my docs to use this webinar , mayo clinic guidelines, etc to go by instead of "standard of care" they always quote me? I have been to so, so, so many docs who won't consider these RLS studies. My physician husband and brother agree with the studies but can't treat me. They aren't specialists in our syndrome and don't have any connections in this field..... So I need to find a way to make them amenable to listen. Or travel to a doc that someone in this group has found who understands our syndrome better.

[WideBody]

I just gave you “Evidence-based and consensus clinical practice guidelines for the iron treatment of restless legs syndrome/Willis-Ekbom disease in adults and children: an IRLSSG task force report”

The is an evidence based report by the experts in the field. Print it, Read it. Highlight it. Show it to your Doctor and ask why does he or she know more than the experts. Then look him in the eye and ask him if he knows a Doctor that is willing to help.

Sorry,I have a great relationship with my Doctor. It wasn’t always that way.