Iron supplementation and periodic limb movement

This post is with regard to the question of which form of iron supplementation is best. I would also like to know how supplementation has helped in addressing periodic leg movement, reducing aerophagia and improving sleep quality.

Background: My sleep study has indicated excessive periodic limb movement and labs show low ferritin levels (21). Other aspects of my iron, as well as hemoglobin, are well into the normal range for a male. I am suspicious that my levels dropped after I drastically reduced meat consumption a few months ago. Various sources have suggested iron supplementation is tricky business and some sources are better than others, with some posing health risks. This is fairly involved and I won't get into the details at this point other than to say I am trying to increase ferritin through the use sources other than meat or ferrous sulfate. I have found a supplement by MegaFoods called Blood Builder, which has received high marks from users. Apparently, it is derived from a yeast source based on research done at a university in New Hampshire. I have just started using the product so I have nothing to report. I would like to know if anyone on this board has experience using this product or other sources of iron they found to be effective in raising ferritin levels.

I have also found a useful source on the connections between ferritin, proper thyroid function (t3/t4 conversion) and sleep (particularly insomnia). If your ferritin is low, you might want to check your t-4 level to see if you have hypothyroidism. http://www.stopthethyroidmadness.com/ferritin/

Thanks for your responses.

Periodic Limb Movement during sleep has been reported to have an 85% correlation with Restless Leg Syndrome (properly referred to as Willis Ekbom Disease or WED). It is my understanding that severe cases of PLMS and WED are treated using the same procedures even when a patient only has symptoms of PLMS.

Iron supplements for WED are often recommended since low levels of the iron protein ferritin are a frequent factor in WED patients. You should talk with you doctor prior to trying iron supplements since too much iron can also cause problems. For WED patients, blood work should include a ferritin measurement in addition to normal iron hemoglobin values and the ferritin value should be over 50 and closer to 75 or 100 even though the lab will report 20 as normal for the general population. Many WED patients have normal iron hemoglobin levels so that they are not anemic, but have very low ferritin.

The first line of iron supplementation that is recommended for WED patients is 65mg iron sulfate twice a day that is taken with Vitamin C. The iron and vitamin C are recommended to be taken together on a empty stomach since food can interfere with proper adsorption of the iron. The catch here is that the iron can be difficult on the stomach and not everyone is able to get their ferritin levels up with iron sulfate. So some patients find it necessary to work with their doctors to get iron by IV treatments. Obviously, this is not something that you can do without a doctor's supervision.

I have been on iron sulfate supplements for several months now. Since my WED and PLMS is severe, I am also on medication so I cannot say whether I have seen improvements due to the iron or it is just the medication.

I take Iron All from Purtian Pride, not for RLS, but for low iron levels. I do take Calcium, Magnesium & Zinc tablets for RLS. My RLS isn't bad, my legs just get "Antsy" at night, I take one andin 15 minutes it's gone.

This is the first I've heard of a connection between iron deficiency and PLMD. I have a constant fight to keep my hemoglobin & ferritin up. Don't remember ferritin # last, but my hemoglobin was 8.2 & my doc likes it above 10. I get infusions of Venifer regularly, its a ferritin/iron product that raises both hemoglobin & ferritin levels. I also get shots of Aranesp (an epogen product), that also raises those levels. I intend to ask my hematologist about this connection with PLMD, and my neuro has never mentioned it, I'll ask him too. I don't take OTC iron supplements, my hematologist said those won't work with my level of deficiency, she said I would need a few bottles to move my numbers a slight bit.

I find it interesting that their is a connection. I have both RLS & PLMD and take prescriptions for that. I guess its true, you learn something new every day. With this wonderful forum, you learn something new with most posts.

You can find long discussions about WED/RLS and iron/ferritin levels on the WED Foundation bulletin board at bb.rls.org.

jencat824 wrote:
I intend to ask my hematologist about this connection with PLMD, and my neuro has never mentioned it,

From the discussions on the WED bulletin board, it appears that most hematologists have little experience with treating WED/RLS. There are even comments that when the WED experts have tried to discuss this with individual hematologists, they really don't seem to understand that WED patients handle iron differently from the general population and that "elevated" ferritin levels are needed.

It is also not a given that neurologists are up to date in their knowledge of WED. I know that mine has no idea about what is going on. The problem is that most of the information about WED has been developed in the last ten to fifteen years, so if your doctor is not very young or very proactive with following the developments, they just didn't get enough info during their schooling and residency.

Sometimes, not often, RLS/PLMD happen without a corresponding low ferritin level. My leg movements have increased by 50% in the last three years with movement related arousals gone up the same amount with a ferritin level just below the top of the normal range. One of the standard meds, Pramipexole, doesn't work for me so I just keep trucking along with an arousal rate of just over 7 per hour.

Do be very careful with supplementary Iron because excess Iron can cause problems.

I cannot be of any help on the types of iron to take for low ferritin. I confess to be being quite haphazard about that. I just know supplementation is best done with periodic monitoring so as to avoid excessive or unnecessarily prolonged treatment. There are some people who have chronic low iron levels that seriously need to exercise caution. Taking iron when the body can't properly process it can be dangerous. For instance, I have an adult child who for years was treated by her doctor for anemia by taking iron. Wasn't till a new doctor investigated further it was determined she had a blood disorder called Thalassemia Minor. It is estimated 60 - 80 million people in the world carry this trait. And many don't know it - they just think they are chronically anemic.

As far as with PLMD, there's still much discussion about how much getting the ferritin up actually helps. Since there's no solid consensus (that I know of) of one cause of all cases of PLMD, stands to reason taking iron will have a range of reported effectiveness. Through years of sporadic supplementation and over 3 years being off the dopamine meds and treating my PLMD with a TENS unit, my RLS/WED dramatically improved. I'm guessing much of my RLS/WED was a component of the augmentation, or maybe the supplementation helped. My PLMD severity improved after going off the dopamine meds on which I suffered augmentation, but even once the augmentation symptoms were removed I still have tormenting PLMD. I fear not having access to my TENS Unit almost as much as my CPAP.

One motivation to getting a lower ferritin level up is that those with lower levels are thought to be more prone to augmentation on dopamine agonists. Nobody wants that - just watch the video linked in my signature if you need some convincing. So if one can increase the chance of a dopamine med being effective for limb movements by getting their ferritin to a recommended level, I think that time and effort is well invested.

My last point (which should have been my first) is that some limb movements are a side effect of medication. Seems that would be the first avenue to investigate in case all the above could maybe be avoided.

kteague wrote: TENS Unit

What do you think of that unit Shaq is promoting?