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.
So, my sleep specialist recommended I try adding an iron supplement pill to my daily diet as part of treatment for my RLS/EKD, and for the last month I did just that. Now, I had some regular bloodwork done. I don't know what my prior levels were before, but these are the numbers I got back:
IRON: 161 (45-182 ug/dl)
FERRITIN: 50 (24-336)
Most of the recommendations I've read say that for someone with RLS/EKD, I should try to have a much higher ferritin number (eg, ~100). But, what is this iron number I got back that seems to be on the high end? What's the difference between the two, and why is one on the high end and on the low end?
Yes, yes, I'll ask my sleep specialist about this, but I don't have an appointment with him for another month and a half, and I figured maybe someone on here is already familiar with this
"Serum ferritin and serum iron blood tests determine iron levels through different means. Your serum ferritin level is the amount of iron in your body, while serum iron measures the level of iron in your blood. Testing can be crucial, according to KidsHealth.org, as iron can build up to damaging levels in your body before symptoms appear."
Seems like perhaps I've got plenty of iron in my blood, but not enough stored for an RLS sufferer. Do I up my iron supplement? hmmm I guess I'll have to wait and ask the Doctor!
Most of us with RLS/WED (yeah, we confused everyone by sneaking EKD in there and then changing it to WED) have reasonable or very good "blood" iron. it's the stored iron that's the problem.
Good you got it to 50. That's now considered the minimum for us. But, as you noted, getting it to 100 is considered the gold standard of ferritin levels, lol.
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.
So, is it risky to take a higher dosage? Does the body start to store more of it over time? How soon should I get bloodwork done again if I start taking a higher dosage?
It's not risky, AFAIK, as long as you're getting your bloodwork done every few months. It takes a LOOOOOOONG time to build up iron.
You can take up to 3 tablets a day - doctor's recommendation in several RLS/WED books - of 325 mg /65 elemental iron. Ferrous sulfate is what they recommend most often. Research is varied regarding which iron is absorbed best. It bother some people; when it causes problems, there are coated and other versions to try.
It took me over 6 months to increase my ferritin from 8 to 34.
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.
I took ferrous gluconate for 6 months and raised my ferritin from 20 to 30. I then took ferrous sulfate for 2 weeks and my ferritin jumped from 30 to 130. I have no idea what it is now, my current doctor is happy with me taking two pills a day (of 65 mg elemental Fe) without checking my iron all the time. I'm a little nervous about that, but she's not.
Beth - Wishing you a restful sleep tonight Click for info on WED/RLS AUGMENTATION & IRON I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
That's very strange. So either you are using a lot of iron each day or you are not absorbing it very well (either/both is common in people with RLS/WED).
I know you are probably doing all of this but just in case your doctor didn't mention it...
Take 500 mg of Vitamin C with the iron. Iron is best absorbed in an acidic environment. Make sure the Vitamin C isn't a non-acidic variety and I take it with non-calcium fortified orange juice first thing in the morning just to be extra sure it's acidic in there.
Don't take it with any other vitamins containing calcium as the iron binds with calcium and both pass through unabsorbed. This was so hard for me as I usually have cereal, yogurt, or a smoothie for breakfast but I made due with bacon. LOL
Some prescription meds can interfere with iron absorption as well but most do not.
Tracy
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.
All I can think of is what Chipmunk has said. Be sure to take it with C, and if at all possible take it on an empty stomach. I take mine at night as I'm lying down in bed; usually (not always ) it's been a while since I've eaten anything.
Also, the fact that you're taking iron, and are unable to raise your ferritin more, suggests to me that you have a disease like RLS/WED - haha just being not funny.
Beth - Wishing you a restful sleep tonight Click for info on WED/RLS AUGMENTATION & IRON I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
