Ferritin and iron

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS, 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.
Hickoryeer
Posts: 11
Joined: Sun May 03, 2009 4:31 pm

Post by Hickoryeer »

I've been lurking on here for a week and this is my 1st post. I have not sought any medical help, but have had RLS about 10 years. No pharmaceuticals tried yet. This probably is no help, but I have found no effect whatsoever from the following: Sodas, salt, warm milk, juice therapy, ice cream, sleep positions, chocolate, caffene, orgasm, magnesium, NSAIDs, B12, tonic water, valerian root, exercise/stretching, iron, melatonin, folic acid, calcium, heat/ice, lotions/creams,message or urination/defecation. Don't ever recall anyone in my family complaining of this condition. There are no recommended physicians here on Hilton Head. My deceased wife was a Homeopathic fanatic, and recommended butcher's broom and that didn't work either. I take no prescription drugs, only OTC drug I take is omeprazole for acid reflux. I get plenty of exercise and rarely get tired even though this crap keeps me up most nights. Enjoy the board though.

ViewsAskew
Moderator
Posts: 16216
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Sorry that you've had no luck....I'd guess most of us have little or no luck with most things long term. Some of us find something that works for a few days or even a week or two, but in the long run, we are back to square one.

Check your ferritin - that's the best non-drug thing we can do. Could be some iron will do the trick if you have ferritin under 100.
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.

Hickoryeer
Posts: 11
Joined: Sun May 03, 2009 4:31 pm

Post by Hickoryeer »

I would be tickled to death to find something that worked for a few days or a week. Of course, I'll try the ferritin.

Hickoryeer
Posts: 11
Joined: Sun May 03, 2009 4:31 pm

Post by Hickoryeer »

In researching ferritin, one article has a long list of symptoms of low ferritin, and I have none of those. http://www.thewayup.com/products/0136.cfm However, I believe that my RLS started at nearly the same time I started using Prilosec for acid reflux. Says something in the article about people with low stomach acid which is the goal of antiacids and omeprazole products. Guess there could be a coorelation.

Hickoryeer
Posts: 11
Joined: Sun May 03, 2009 4:31 pm

Post by Hickoryeer »

Just got back form Walgreen and CVS pharmacies and no one has the foggiest idea what ferritin is. Do you have a brand name of a product that is ferritin?

ViewsAskew
Moderator
Posts: 16216
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Oh - ferritin isn't somethign you take. You MUST get your doctor to test it - it's a test. Once you know if it's under 100, then most doctors recommend you take supplemental iron. Ferritin is a measure of the iron your body has stored.
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.

Hickoryeer
Posts: 11
Joined: Sun May 03, 2009 4:31 pm

Post by Hickoryeer »

There is a product called Ferritin that is shown at the top of the page in the article that I linked above. It is produced by a company called Cardiovascular Research, Ltd. Says it is a bioavailable iron that comes in a 60 capsule bottle. Each capsule is 5 mg. and the bottle sells for $12.55.

ViewsAskew
Moderator
Posts: 16216
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

They may call it ferritin, but it isn't really ferritin, if you get my drift. Ferritin is simply a measure of our iron. You improve it by taking iron. And, what is low for someone with RLS is NOT low for someone without RLS. Hope that helps.
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.

Hickoryeer
Posts: 11
Joined: Sun May 03, 2009 4:31 pm

Post by Hickoryeer »

Thank you!

Hickoryeer
Posts: 11
Joined: Sun May 03, 2009 4:31 pm

Post by Hickoryeer »

What are the dangers of taking an iron supplement without getting a ferritin test from a doctor? There are no recommended RLS Doctors on Hilton Head and I'm not confident that mine will take this syndrome seriously. The closest Doctor recommended is in Columbia, which is 2 1/2 hours from here.

ViewsAskew
Moderator
Posts: 16216
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

There are dangers, unfortunately.

There is a condition called hemachromatosis which is when your body absorbs too much iron. It can lead to serious problems. While about 20 percent of RLSers respond wonderfully to iron therapy and another 40% get at least some relief, another 40% get no relief.

So, you could be in the 40% who gets no relief from it and already have enough iron and ferritin. When you take the iron, you could boost yourself into TOO much iron/ferritin, and that would be bad.

I haven't a clue as to how prevalent it is, just that the doctors consider it a nasty condition and always say to get the test.

It's pretty rotten when the doctors don't get it and may not give you the tests you need....makes me crazy :twisted:
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.

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »


mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »


Hickoryeer
Posts: 11
Joined: Sun May 03, 2009 4:31 pm

Post by Hickoryeer »

Went ot the Doctor for the first time today about RLS. He questioned me about the symptoms, but dismissed the chance of low iron being the problem. He ended up giving me a prescription for .125 Mirapex ( Over $180 for 60 tablets). He also said I should take daily: 2 B100 tablets, 2 Calcium/D tablets, 2 Fish Oil and 4 Coenzyme Q10. He said no vitamin E, C or A.

SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Post by SquirmingSusan »

I would press the doctor on the ferritin issue, especially since you mentioned that you take omeprazole. That medication, and others like it, make it much more difficult for you to absorb iron from your food. So it IS possible that your symptoms are related to low ferritin.

Also, I don't know if you're male or female - but women who have monthly periods tend to have chronically low ferritin. I had one doctor tell me that she doesn't bother with dealing with low ferritin because "it's impossible to get the ferritin levels up to normal." I disagreed and found another doctor who would give me iron infusions. Low ferritin is less common in men, but when taking omeprazole, it's certainly possible.

One thing about Mirapex - stick with the lowest possible dose that controls the symptoms. The doctors like to raise the dosage regardless of whether the dose increase is needed to control symptoms. That can cause a lot of problems in the long run.

Best wishes.
Susan

Post Reply