having ferritin serum level checked

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Polar Bear
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having ferritin serum level checked

Postby Polar Bear » Thu Apr 03, 2014 9:59 pm

Gabby - good for you, speaking up for yourself and fighting your corner... knowledge is everything.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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having ferritin serum level checked

Postby ViewsAskew » Fri Apr 04, 2014 1:18 am

It's very unlikely to hurt. And, given that increased iron levels help many, it's certainly worth trying.
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.

Polar Bear
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having ferritin serum level checked

Postby Polar Bear » Fri Apr 04, 2014 8:06 pm

With regard to iron levels, my ferritin has been around 70/80 for some time.
I had reason yesterday to have bloodwork done and asked the nurse would she 'throw in' a ferritin test while she was at it, which she did.
My ferritin came back at 107 - happy days.
Why it should have gone up I have no idea.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

debbluebird
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Re: having ferritin serum level checked

Postby debbluebird » Mon Jun 16, 2014 9:52 pm

Had my labs done this spring. My total iron serum is 141 and my ferritin is 413. I take one 325 mg of iron every day. My sleep doctor said not to take anymore than that, that it really didn't help. I don't know why my ferritin is so high. The serum iron has gone up, from 63 to 141 since starting the iron supplement. My WED/PLM is better now. But I also have less inflammation in my body from arthritis, with my joint replacements.

TimG
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Re: having ferritin serum level checked

Postby TimG » Wed Jul 16, 2014 9:42 pm

I'm one of those lucky persons whose symptoms of RLS have decreased with an increase in ferritin level. I initially had a ferritin of about 20. Two things have helped to increase it: (1) I stopped donating whole blood, which was decreasing ferritin levels. (2) I began taking daily oral iron supplements (ferrous sulfate), and over the past year ferritin levels have slowly increased to 61. I take pramipexole at night.

chuas2
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Re: having ferritin serum level checked

Postby chuas2 » Wed Aug 06, 2014 8:13 pm

I've read that taking serum ferritin may not do anything for WED, because of the blood brain barrier. Researchers have postulated that it's the brain iron that determines the deficiency that can exacerbate WED. So, testing blood and organs may show an adequate supply of iron, but only a cerebralspinal fluid draw can determine the amount of iron concentrations in the substantia nigra (primary brain regions where dopamine-producing cells reside). That said, I've upped my ferritin...

Rustsmith
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Re: having ferritin serum level checked

Postby Rustsmith » Wed Aug 06, 2014 8:58 pm

chaus2, iron deficiency has been shown to be a cause of secondary WED. The term iron deficiency for WED is not the same thing as anemia that is diagnosed by the standard blood test. Instead, ferritin is a indicator of total iron stored in the body and this includes the levels in the brain. Yes, WED is thought to be associated with low iron levels in specific areas of the brain, but to quote my doctor "the ferritin level in the blood is an inexact indicator of the iron levels in the brain, but it is the only acceptable measure that is available to us". There are cases of secondary WED due to low ferritin. For these cases, increasing the ferritin should resolve the symptoms.

Unfortunately, many (most?) of us here have primary WED and so increasing ferritin levels does not fix us. BUT, that does not mean that we can't also benefit from increased ferritin. For those taking dopamine agonists (DA), low ferritin levels have been correlated to increased probability of augmentation. Therefore, the current thinking is that anyone taking a DA should have a minimum ferritin level of 50 and preferably over 100 simply to reduce the chance of augmentation.
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.

ViewsAskew
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Re: having ferritin serum level checked

Postby ViewsAskew » Wed Aug 06, 2014 9:33 pm

For secondary WED, the issue is usually hemoglobin, or iron deficiency. From primary WED, it is serum ferritin. As Steve noted, you can't necessarily increase serum ferritin in the brain through supplementation or infusion, however you sometimes can. Even if you do not take a DA, it's always worth trying, and is very important if you do take a DA. As I understand it, research at Johns Hopkins has been of people who have low serum ferritin, have primary WED and infusions help up to 80% of the time. As Steve noted, this does NOT mean that we're cured! Just that one of the issues related to our disease is resolved and we reduce symptoms (or temporarily eliminate them). So far, they always eventually come back, but some people have had up to a couple years of relief.
Ann - Take what you need, leave the rest



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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.

chuas2
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Re: having ferritin serum level checked

Postby chuas2 » Wed Aug 06, 2014 10:24 pm

Thanks Steve and Ann, for clarification. I have started increasing ferritin, and intend to have my doctor check it overall next week.
Many thanks.
Kris

badnights
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Re: having ferritin serum level checked

Postby badnights » Wed Nov 12, 2014 9:05 am

fyi I take 2 ferrous sulfate 325 daily with vitamin C on an empty stomach (mid afternoon and bedtime.) If I stop the iron or reduce it, I notice within days by an increase in symptoms. This test was (intentionally and a few times unintentionally) repeated 4 or 5 times over 2 or 3 years.. If I didn't take the iron, my symptoms were present uncontrolled for most of the day, and interfered with sleep despite my max medication dose at night (hydromorph contin). When I resumed the iron, the symptoms backed off within days.

My ferritin was 28 or so when I first started iron therapy and has since risen to 120. Not sure where it is now.

Conclusion I needed the iron as well as the hydromorph contin - neither alone was sufficient.
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.

Polar Bear
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Re: having ferritin serum level checked

Postby Polar Bear » Wed Nov 12, 2014 12:30 pm

I've got lazy over my iron (and other supplements)........ as I make my way to the medicine cupboard....
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

TimG
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Re: having ferritin serum level checked

Postby TimG » Thu Jan 01, 2015 6:50 am

My highest ferritin level taking 27 mg iron tablets twice daily was 61 (up from 19 when I started supplementation). A week ago it was down to 48 and my doctor suggested doubling the dose, taking the iron on an empty stomach with Vitamin C.

A couple of questions for those of you who take ferrous sulfate (325 mg) supplements: Do you take the supplement with a juice like OJ that is high in Vitamin C, or with a Vitamin C tablet? (How much?) Does the higher dose cause constipation? Any other suggestions?

I've been taking 0.125 mg of pramipexole in the evening for the past couple of years, and have only occasional bouts of WED. No augmentation.

badnights
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Re: having ferritin serum level checked

Postby badnights » Thu Jan 01, 2015 7:59 am

I take each pill with a 500mg pill of C. I am not always careful about the empty stomach. I am lucky in that it rarely hurts my guts, but when it does, it causes pain, not constipation. I eat lots and lots of veggies, though.

Sounds like a good plan to double it up.

One mistake I was making earlier - probably - was taking both iron pills at once. Now I split them up, one early and one when I go to bed.
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.

ViewsAskew
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Re: having ferritin serum level checked

Postby ViewsAskew » Thu Jan 01, 2015 8:56 am

Some people use juice. But, I don't know if studies show one is better than the other.
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.

Rustsmith
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Re: having ferritin serum level checked

Postby Rustsmith » Thu Jan 01, 2015 9:07 am

I am like badnights, I take my iron with a 500mg vitamin C tablet and I always take them on an empty stomach. I started out taking them twice a day, but got my ferritin up high enough that I was told to cut back, so now it is once/day. I will see where I am on this new regime when I get tested again later this month.
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.


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