My PSA about Restless Leg Syndrome

[bethben]

It took me years to figure this out so I am offering my own PSA.  Did you know that even if your ferritin levels are normal, you may still need more iron.  John Hopkins, which has a RLS clinic suggests that ferritin blood levels need to be around 75-100.  The last time mine were tested, they were at a 33 which is in normal ranges and not considered anemic.  I've since doubled my iron intake and now am not dealing on a regular basis with RLS.  I am so glad I was able to avoid the drugs that treated this syndrome.  They had nasty side effects.  Here's the John Hopkins article.  https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/restless-legs-syndrome/what-is-rls/causes.html

[BeachGal]

That's fantastic. Are you starting to sleep better now?

[Pen]

This is true for a number of minerals/ vitamins/ nutrients: “normal” may not be optimal. Or even sufficient in some cases. 

[gardenmom5]

here are the standard types of iron testing - there is more than one that should be run.  most could be "in range" - and one be completely out of whack.   I'm currently taking as much as 100mg of iron bisglycinate a day to bring mine up.  I can tell when I haven't been taking enough.   we do iron labs  a few times a year.  it's also been very helpful to have added in a micromineral complex.

Iron tests evaluate the amount of iron in the body by measuring several substances in the blood. These tests are often ordered at the same time and the results interpreted together to help diagnose and/or monitor iron deficiency or iron overload.

• Serum iron test—measures the level of iron in the liquid portion of the blood.
• Transferrin test—directly measures the level of transferrin in the blood. Transferrin is the protein that transports iron around in the body. Under normal conditions, transferrin is typically one-third saturated with iron. This means that about two-thirds of its capacity is held in reserve.
• TIBC (total iron-binding capacity)—measures the total amount of iron that can be bound by proteins in the blood. Since transferrin is the primary iron-binding protein, the TIBC test is a good indirect measurement of transferrin availability.
• UIBC (unsaturated iron-binding capacity)—The UIBC test determines the reserve capacity of transferrin, i.e., the portion of transferrin that has not yet been saturated with iron. UIBC also reflects transferrin levels.
• Transferrin saturation—a calculation that reflects the percentage of transferrin that is saturated with iron (100 x serum iron/TIBC).
• Serum ferritin—reflects the amount of stored iron in the body.

[zimom]

I had RLS for years, but had no idea what it was.  I finally put the pieces of the puzzle together when I was older and one of my meds for my chronic migraines also dramatically improved my RLS.  Thanks for the information about the iron.  Hoping I might finally 'outgrow' my migraines after menopause and then I might finally be able to wean off my daily migraine drugs.  Will try to keep the iron information in the back of my mind in case the RLS comes back.  

[bethben]

I am sleeping better, but am also taking Trazadone.  I'm still trying to figure out the right dosage on that one, but am doing better.  Just not having jumpy leg that started around 7pm is really nice.  The RLS was getting to a point where all of my fixes to help the problem were no longer working.  This simple fix is like when I found out gluten was causing my glute muscles to spasm and cause a lot of pain.  That fix took me 15 years to figure out.  I wish there were more doctors that understood how food and vitamin levels relate to body issues.  

 

ETA:  I increased my Iron before I started taking Trazadone and the RLS went away at that time so I do know it was iron that was the solution.  When I still couldn't sleep, I added the Trazadone.  

Edited November 15, 2018 by bethben

[J-rap]

This is super interesting... thanks for posting!  I have quite severe RLS.  The one time I was completely RLS free was when I had -- a few months earlier -- been diagnosed as anemic, so was put on a high iron prescription drug.  The doctor forgot to tell me I was only supposed to take it for a month or two, so I stayed on it a lot longer!  I'm sure the iron content in my blood was very high by then, but my RLS completely went away.  Since then, I've always suspected there was a connection between iron and RLS, so this article makes complete sense to me.    

[Soror]

18 minutes ago, Pen said:

This is true for a number of minerals/ vitamins/ nutrients: “normal” may not be optimal. Or even sufficient in some cases. 

Yes, for sure! I'm glad you found some answers and are finding relief.

[PrincessMommy]

Yes,  I did know that, but it's always good to reiterate this information.   I'm so glad you've found relief.  

 

I found that once I get my ferritin levels up, and I went through menopause, that I don't need to keep taking iron.  Yay!    Ocassionally, I'll have a bad night, but it's become rarer and rarer.   Also, I find that allergy meds, such as Claritin and Allegra, are triggers for me.   When seasonal allergies flare up I'm going to try something new like Xyzal.  

[ktgrok]

1 hour ago, J-rap said:

This is super interesting... thanks for posting!  I have quite severe RLS.  The one time I was completely RLS free was when I had -- a few months earlier -- been diagnosed as anemic, so was put on a high iron prescription drug.  The doctor forgot to tell me I was only supposed to take it for a month or two, so I stayed on it a lot longer!  I'm sure the iron content in my blood was very high by then, but my RLS completely went away.  Since then, I've always suspected there was a connection between iron and RLS, so this article makes complete sense to me.    

Yup. I only get RLS when I'm pregnant, and I always get anemic when pregnant, or at least borderline. Last time I avoided outright anemia but ferritin was low. Still got it. 

Oddly, I get it not just in my legs, but in my arms and hands as well. Ick. 

[J-rap]

1 minute ago, Ktgrok said:

Yup. I only get RLS when I'm pregnant, and I always get anemic when pregnant, or at least borderline. Last time I avoided outright anemia but ferritin was low. Still got it. 

Oddly, I get it not just in my legs, but in my arms and hands as well. Ick. 

Oh gosh, it's miserable enough in the legs...  I can't imagine having it in the arms and hands too.  Yuck!!

[jg_puppy]

Thank you for posting about this. My doctor has been telling me that my ferritin is low (9.3), but I didn't realize just how low it is compared to what is optimal until I started reading these posts. Now I need to figure out what to take to get my level up. I have tried several iron supplements, but I haven't found one that I like yet. 

[bethben]

1 hour ago, Ktgrok said:

Yup. I only get RLS when I'm pregnant, and I always get anemic when pregnant, or at least borderline. Last time I avoided outright anemia but ferritin was low. Still got it. 

Oddly, I get it not just in my legs, but in my arms and hands as well. Ick. 

I was getting it in my arms also which made it unbearable.  There are only so many places that you can put a heat pad on at the same time.  

[shawthorne44]

35 minutes ago, jg_puppy said:

Thank you for posting about this. My doctor has been telling me that my ferritin is low (9.3), but I didn't realize just how low it is compared to what is optimal until I started reading these posts. Now I need to figure out what to take to get my level up. I have tried several iron supplements, but I haven't found one that I like yet. 

 

You need to lower your standards.  Sorry.  Find one you can mostly, sort-of tolerate.  

[bethben]

Also, I forgot the "how to take the iron" PSA.  Take iron on an empty stomach with at least 200 mg of vitamin C.  Don't eat anything for at least 1 1/2 hours.  This did make a difference for me.  Iron bisglycinate doesn't make me nauseous so I've been taking that.

[GoodGrief]

How much iron are you taking? My college aged daughter has had this for years. Makes for some awkward evening dinners and red eye flights because she is twitching terribly. Docs have not offered solutions.

[Rosie_0801]

I thought RLS was caused by a lack of magnesium.

 

For those having trouble with iron supplements, try Spatone or one of those suspended in liquid, instead of pills.

[bethben]

59 minutes ago, GoodGrief1 said:

How much iron are you taking? My college aged daughter has had this for years. Makes for some awkward evening dinners and red eye flights because she is twitching terribly. Docs have not offered solutions.

I had a flight too where the seats were so close I couldn’t move my legs or stretch well.  It was miserable.  I am taking almost 80 mg per day via tablet.  Your daughter should get her ferritin levels checked.  Anything below 75 in people with RLS is too low.  People whose doctors know about the RLS and iron connection will give iron transfusions at lower but “normal” levels because it does help with RLS.  I was taking about 40 mg per day and had a ferritin level of 33 so that’s why I doubled it.  She should also get it checked periodically.  Iron is one of those things you don’t want to have in excess.

I though RLS was a magnesium thing too and really upped my magnesium both orally and through a spray.  It helped a little but the increase in iron supplements has made it stop.  

[mum]

I second it all. My ferritin was low enough that I had IV iron infusions. It went up nicely after each one, but never stayed up. I didn't tolerate any iron supplement. Ferritin being high enough makes a significant improvement in my sleep. Many doctors don't even know to check ferritin. Now if I have blood work ordered for any reason, I always ask them to include ferritin level. It helps me keep track.

[Junie]

1 hour ago, mum said:

I second it all. My ferritin was low enough that I had IV iron infusions. It went up nicely after each one, but never stayed up. I didn't tolerate any iron supplement. Ferritin being high enough makes a significant improvement in my sleep. Many doctors don't even know to check ferritin. Now if I have blood work ordered for any reason, I always ask them to include ferritin level. It helps me keep track.

So how do you bump up your ferritin without iron supplements?

I have been fighting with iron supplements and I'm not winning.

[City Mouse]

My DS's sleep specialist doctor wants his ferritin levels to be at least 50. 

[PrincessMommy]

1 hour ago, Junie said:

So how do you bump up your ferritin without iron supplements?

I have been fighting with iron supplements and I'm not winning.

My doctor threatened to put me on IV iron if supplements didn't work.  I combined iron supplements (at least 80mg) with Magnesium (about 250-450 - can't remember) to help with the constipation. 

Have you talked with your doctor about it?  

[Junie]

9 minutes ago, PrincessMommy said:

My doctor threatened to put me on IV iron if supplements didn't work.  I combined iron supplements (at least 80mg) with Magnesium (about 250-450 - can't remember) to help with the constipation. 

Have you talked with your doctor about it?  

Yes.  I had a blood transfusion in May and we've been trying to get it right ever since.  She says that my numbers are good so she won't order an infusion.

Per her recommendation I stopped taking the iron for a few weeks; we've been trying to add it back in gradually, just a few times a week, but it's not going well.

I need to see if I can find the most recent bloodwork to see where my ferritin levels are.  I'm guessing in they're not optimal.

 

[trulycrabby]

Oh gosh, how well I remember those low-ferritin years; Floradix was my 3:00 am "crack pipe" on especially bad nights.

[Junie]

For those of you who take liquid iron supplements, do you have any problems with your teeth being stained?

[Arcadia]

2 hours ago, Junie said:

For those of you who take liquid iron supplements, do you have any problems with your teeth being stained?

 

No teeth staining problems with Floradix (liquid) or iron tablets. However coffee stain my teeth so just brushing teeth to get rid of coffee stain would get rid of any other stains at the same time.

[Carol in Cal.]

I found that the iron in Stuarts' prenatal vitamins was most accessible to me but didn't cause any constipation.

[shawthorne44]

For me, the RLS cure was Potassium.  With just that, 98% of the time I was symptom-free.  I added magnesium and now if I get twitchy during the day, that reminds me that I have had my dose lately.  I use the Now powder.