Raising iron levels

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Rustsmith
Moderator
Posts: 2556
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Raising iron levels

Postby Rustsmith » Wed May 03, 2017 2:59 am

As you scan through our various discussions, you will see a common refrain "we are all different".

One of the "causes" of RLS that is fairly well agreed upon is that it is associated with low iron levels in a specific portion of the brain. Also, iron is one of the precursor chemicals that the brain needs to make its own dopamine.

When I was much younger and my RLS was still mild, I could sort of turn it off by taking oral iron. Now that my RLS turned severe, I work to keep my ferritin levels high, but it doesn't do me much good. I know that I have one of the genes that is strongly associated with RLS and a theory for that gene is involved with making a protein that transports iron from the blood into the brain. So, I can have high blood ferritin and yet still not get it into my brain. On the other hand, others seem to dump too much iron from their bodies or have very low iron levels for other reasons, such as kidney disease. Some of these people are helped by oral iron, some by iron infusions and others (possibly like me) see minimal benefit.

Finally, if you are taking any of the dopamine agonist medications it is important to get your ferritin levels above 75 (and better yet 100) to help reduce the probability of augmentation. So, even if increasing your ferritin levels does not help or stop your RLS, it can still be a good idea.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

legsbestill
Posts: 348
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Raising iron levels

Postby legsbestill » Wed May 03, 2017 9:46 am

Hi Steve, I am pretty sure that raising my iron levels has made a big improvement to my symptoms. My serum ferritin level was 39 this time last year when I came off mirapexin. That is relatively low for rls. I had augmented on mirapexin so my symptoms were atrocious in the immediate aftermath of stopping it. They remained very bad for nearly six months and I found it very difficult to control them with medication. I was taking a lot of OxyContin daily. Then around October they started to improve a lot. This coincided with my serum ferritin rising to around the 80s thanks to taking oral iron. Last time I checked (when I started this thread) they were over 100.

Now I can control my rls with 8 to 10grams of Kratom taken in two doses through the night. This is not a lot of medication by comparison with what I was taking six months ago. The only thing that changed particularly over that time is my serum ferritin.

Now I just have to find a way to stop feeling debilitating exhaustion the whole time. It seems to get worse rather than better. I'm not sure if it is the Kratom or just generally poor quality sleep. It is such a struggle to get up - I just want to be in bed dosing all the time. Of course this is a luxury in itself as it used to be impossible for me to lie down thanks to rls. It's just I used to be a very active person ...

badnights
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Raising iron levels

Postby badnights » Wed May 03, 2017 10:46 am

Hi Steve

Yes! When my ferritin was low, my symptoms were unbearable. I have tried three experiments (one unintentional) of lowering my daily iron intake, and every time my symptoms became more severe about 2 or 3 weeks later. I never figured it out right away, only after a few weeks of suffering. Then when I resumed the iron, or the higher dose of iron, there was a similar delay of 2-3 weeks before the symptoms subsided again, but subside they did.

There are some studies that have clearly linked ferritin levels to two things: low ferritin is linked to greater severity of RLS/WED symptoms; and low ferritin is linked to a higher risk of augmentation (worsening of the disease) on dopamine medications. There's a link in my signature that leads to some of those studies.

The word normal is meaningless when we talk about ferritin and RLS/WED - normal for non-WED people is 20 or above. For WED people, it should be 100 or more. Most doctors are not aware of this. Nor is it easy to explain. As Steve says, we're all different, and your normal ferritin is not necessarily my normal. We apparently have trouble storing enough iron in our brains, even if we have enough in our hemoglobin.

So - some people notice a substantial difference from raising their ferritin, others don't. The researchers at Johns Hopkins who pioneered a lot of the work on iron infusions for WED/RLS found that about a quarter of the patients they gave infusions to experienced no benefit, whereas the other 75% experienced substantial benefits.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

yawny
Posts: 186
Joined: Sun Nov 08, 2015 4:20 pm

Re: Raising iron levels

Postby yawny » Wed May 03, 2017 10:33 pm

legsbestill wrote: Now I just have to find a way to stop feeling debilitating exhaustion the whole time. It seems to get worse rather than better. I'm not sure if it is the Kratom or just generally poor quality sleep. It is such a struggle to get up - I just want to be in bed dosing all the time. Of course this is a luxury in itself as it used to be impossible for me to lie down thanks to rls. It's just I used to be a very active person ...


Legsbestill, I forget, have you ever tried Gabapentin? My neurologist had me get a book "The Fibro Manual" (Lipton). He said my lack of sleep had caused me fibromyalgia symptoms. I love the book because it explains the mechanics of sleep in a way I've not seen. In particular, there's a page (page 74) of Medications & Supplements to Improve Sleep. She breaks it into 3 categories (Deep sleep promoters, Sedatives, Stress response blockers), and it's the only place I've seen medications and supplements put into groupings. So Gabapentin...it's in the category of deep sleep promoters along with magnesium and other drugs. I feel more daytime energy since I started it myself. I'd like to think I'm getting more deep sleep. Although it took me a ridiculously long time to write these few sentences so...

Side Note: This is my 100th post! I'm imagining confetti and balloons falling from the ceiling.

ViewsAskew
Moderator
Posts: 14783
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Raising iron levels

Postby ViewsAskew » Thu May 04, 2017 4:22 am

yawny wrote:
Side Note: This is my 100th post! I'm imagining confetti and balloons falling from the ceiling.

Image
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

yawny
Posts: 186
Joined: Sun Nov 08, 2015 4:20 pm

Re: Raising iron levels

Postby yawny » Thu May 04, 2017 4:41 am

Yay!!! Ann, you're the best

legsbestill
Posts: 348
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Raising iron levels

Postby legsbestill » Thu May 04, 2017 8:58 pm

Congratulations on the centenary, yawny. And every one of your posts is informative, kind or very funny - often all at once.

ViewsAskew
Moderator
Posts: 14783
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Raising iron levels

Postby ViewsAskew » Thu May 04, 2017 9:55 pm

It is so easy to be nice to the lovely people who populate our board, Yawny!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

peanut1
Posts: 277
Joined: Sat Jun 04, 2011 8:06 am

Re: Raising iron levels

Postby peanut1 » Fri May 05, 2017 4:43 am

I was doing enzymes with my iron for a couple of weeks and THOUGHT I noticed a difference, but then got off it and have not tracked it since. Not sure if the enzymes could help digest the iron better which might help get to the brain. Will let you know if I see any significant improvement, but first I have to get back on it.

badnights
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Raising iron levels

Postby badnights » Fri May 05, 2017 9:16 am

The enzymes wouldn't affect how supplemental iron is taken up, they only help to digest food. So they might help you get more nutrients out of your food.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


Return to “Non-prescription Medicines, Supplements, Diet”

Who is online

Users browsing this forum: No registered users and 1 guest