Ferritin Nearing 100

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TimG
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Ferritin Nearing 100

Postby TimG » Wed May 27, 2015 4:37 am

I've been making a concerted effort since February to raise my ferritin level to 100 by taking 65 mg of iron daily. I'm nearing my goal with a ferritin of 81. My ferritin was low normal at the start.

Hip, hip, hooray \O/ \O/ \O/

ViewsAskew
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Re: Ferritin Nearing 100

Postby ViewsAskew » Wed May 27, 2015 8:35 am

Congrats. Hope it helps some.
Ann - Take what you need, leave the rest

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Polar Bear
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Re: Ferritin Nearing 100

Postby Polar Bear » Wed May 27, 2015 1:49 pm

Well done... you've done well in 3 months.
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badnights
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Re: Ferritin Nearing 100

Postby badnights » Sat May 30, 2015 6:33 pm

What type of iron are you using?
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lhoff12085
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Re: Ferritin Nearing 100

Postby lhoff12085 » Tue Jun 02, 2015 12:39 am

Are you experiencing any improvements to how you feel? I started taking iron a month or so ago and the daily fatigue I felt has dissapeared. It's a huge difference for me. I also have less achiness and pain during the day. I will have my blood rested in 3 months. My level was 33.

ViewsAskew
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Re: Ferritin Nearing 100

Postby ViewsAskew » Tue Jun 02, 2015 2:55 am

My SIL swears she gets immediate relief by taking oral iron. She has mild RLS/WED and all she has to do it take a tablet and Voila!

I really wish it worked that way for all of us!
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.

TimG
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Re: Ferritin Nearing 100

Postby TimG » Tue Jun 02, 2015 6:00 am

badnights wrote:What type of iron are you using?


Ferrous sulfate tablets (325 mg, which is 65 mg of elemental iron)

TimG
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Re: Ferritin Nearing 100

Postby TimG » Tue Jun 02, 2015 6:06 am

lhoff12085 wrote:Are you experiencing any improvements to how you feel? I started taking iron a month or so ago and the daily fatigue I felt has dissapeared. It's a huge difference for me. I also have less achiness and pain during the day. I will have my blood rested in 3 months. My level was 33.


It's interesting that you should mention iron and fatigue. I, too, have felt fatigue when my ferritin was low normal. With the increasing ferritin, I have felt less daily fatigue, achiness and pain, as you have. My red blood cell count, hemoglobin, and other indices that are part of a complete blood count have always been normal, and are still normal, but the ferritin increase has had a real or placebo effect.

lhoff12085
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Re: Ferritin Nearing 100

Postby lhoff12085 » Wed Jun 03, 2015 5:20 pm

TimG, My change has been so significant that it has to be the result of the iron. I used to have coffee or take a caffeine pill every afternoon to get through the day. I all of sudden realized that I wasn't doing that. I feel no need. It took me a few weeks longer to realize that the ashiness and pain were virtually gone. Since nothing else has changed, I can only attribute it to the iron also. I have fatigue problems for years - even talked to my dr about it but my labs are always normal so nothing was done. One other symptom that's gone - and I've never heard anyone describe this - is a feeling of heaviness in my thighs while exercising. I'm thin so it's not a weight issue but I feel like I have huge legs when I lift them e.g. riding a bike or running. That is also gone. It's really like a miracle for me.

Hope it continues for you. Let me know. I was so glad to hear that someone experienced similar results. Laura

BTW for badnights - I'm taking Feosol brand Carbonyl Iron. I know the literature says to take Ferrous Sulfate but I bought this before I knew. It's "Gradual and Gentle Iron Absorption" and I haven't had a trouble w my stomach, etc. I tried ferrous sulfate and did have some minor stomach issues. Since this is working, I'm sticking to it.

lhoff12085
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Re: Ferritin Nearing 100

Postby lhoff12085 » Wed Jun 03, 2015 5:32 pm

ViewsAskew wrote:My SIL swears she gets immediate relief by taking oral iron. She has mild RLS/WED and all she has to do it take a tablet and Voila!

I really wish it worked that way for all of us!


I actually felt small rush for the first week taking iron. I somewhat dismissed it but after realizing how significant the changes were in how I felt, realized it must have been the iron. I feel very fortunate but am annoyed that something so simple could have helped me years ago.

It does NOT help w my leg spasms at night though. Possibly over time, as my ferritin level increases, it will. I still need to take ropinerole.

ViewsAskew
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Re: Ferritin Nearing 100

Postby ViewsAskew » Thu Jun 04, 2015 12:04 am

I talked to Karla D - the Foundation's Director - today. She mentioned how many of us assume iron is OK to take without knowing our iron levels. Since this thread was here, I thought it a good reminder - always, always, always get a serum ferritin and hemoglobin test before you take iron, as the original poster and others in the thread have done! Even in small doses, for those of us with proclivity toward hemachromatosis, can have very, very, very dire consequences! We always assume that we must have low ferritin - but it's not always true.
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.

figflower

Re: Ferritin Nearing 100

Postby figflower » Tue Jun 09, 2015 6:36 am

I am exactly like ViewAskew sister in law and for that matter my sister is the same. We get immediate, albeit short lived relief from one iron tablet. I read about it years ago on another website that said "just take iron at night, there's something about that free floating iron that gets rid of the RLS." Because I have IBS I bought a kind call called Gentle iron, aka iron bis-glycinate. I wait to get an attack before I take it and it has to be on an empty stomach. My stores are slightly over 100 and that fact does absolutely nothing for my RLS. My brain (and probably all of our brains) can't call up that much needed iron from our stores. It is only when it is circulating in our bloodstream that it seems our brains can retrieve some. One time I ran out of the Gentle Iron and bought ferrous sulphate from a drug store. I figured I'd rather have an upset stomach than RLS. It did nothing for my RLS. I took a second one and eventually fell asleep. I tried a few more times but it never works for me. I guess that form of iron is tough for my stomach to breakdown and if it doesn't get broken down it doesn't enter the bloodstream or maybe not quick enough and doesn't relieve the RLS. I also read that if your iron stores are too high then your body clamps down and won't let any pass from the GI Tract into the bloodstream. So I'm afraid that one day the iron won't work so I am trying to lower my stores.

Anyways I got tired of taking iron every night (because back then I had RLS everynight), and started to do research. I realized that the almost daily antihistamines, antacids and melatonin that I was taking was giving me restless body of an unimaginable proportion. The iron worked even though I was taking these RLS unfriendly drugs. Once I stopped all of those substances it was like a light switch, the restless body went to zero. I believe statins, hrt, beta blockers and antidepressants can all do the same. Sometimes I have to take a benedryl or an antacid and it will always give me restless leg and that is when I will take the iron. So one little antacid (Tagamet) will give me full blown RLS even though my RBC is 15 and my iron stores are over 100. Or I find that if I overeat one day...more like one night, the RLS will be triggered as well. It doesn't seem to matter so much as what I eat but the quantity. I read one study using mice whereby they overfed some and underfed others. The mice that were under-fed had more and better dopamine receptors. Supposedly that is what RLS is - shoddy dopamine receptors (especially the D2 receptors). And supposedly they're shoddy because our brains (not our bodies) are pathetically low on iron. One team of scientists nicknamed RLS "the anemic brain." The receptors need iron to be big and strong but our brains either can't call it up or can't hold on to that iron. So ViewAskew's sister in law and myself are literally sneaking our brains some iron at night. But by the dawn's early light that iron is gone from our bloodstream and must be repeated with each and every attack. It's not a cure by any stretch. The cure, or best treatment, in my humble opinion, would be to build up the receptors by under-eating occasionally and maybe to start looking at our gut microbiome. Those little critters love and need iron and just might be stealing away too much iron. Or our bodies might think that our flora and fauna rise to the level of an infection and sound the red alert. When the red alert is sounded then our bodies withhold iron from the bacteria, but in the process withhold it from other organs of the body, including the brain.

I'm really confused as to why so many leading RLS experts want us to get our iron stores way up there? If that were the answer then none of us would have RLS. And I've read about so many people who got their iron up, felt good while taking the iron and then there RLS came roaring back when they stopped?

Rustsmith
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Re: Ferritin Nearing 100

Postby Rustsmith » Tue Jun 09, 2015 8:51 am

Figflower, perhaps my experience with iron supplements will shed a bit of light on the subject. Many years ago I complained to my GP about a problem where my legs would go crazy within minutes of takeoff for airline flights. I flew internationally almost weekly at times for my work, so it was becoming a problem.

I now know that this was moderate RLS, but I don't remember if he used the term at that time. He suggested iron supplements, which seemed to resolve the problem. I would take them for a while when I was having problems and would forget once the RLS/WED went away.

Jump forward a few years to retirement and suddenly my RLS/WED got so bad that it would now be considered severe. Note that all that I had ever taken was iron. My RLS/WED was so bad that it was causing major sleep deprivation and the neurologist treating my migraine headaches had no idea that what I was complaining about was RLS. I had symptoms in my arms, legs and torso at night and in my arms almost all the time. Finally, during a sleep study with a different doctor, I was diagnosed with RLS/WED and was started on pramipexole. They also found that my ferritin was 40, so I was told to take one iron sulfate tablet with a vitamin C two times each day on an empty stomach. Six months, later they checked my iron and found it to be 325, so I was told to stop. To be honest, I could not tell whether or not the iron was doing anything because at first the dopamine was working and then I started to augment.

When I was told to stop taking iron, I had a pretty good idea of what was going on, so I did not stop but cut it back to one tablet every two days or so. The next six month test found my ferritin to be 165 and the last time around it was around 200.

So the morals of this tale are:
1 The iron sulfate tablets seemed to work well while I had a moderate case of RLS/WED but not after it turned severe
2 I was able to increase my ferritin levels from 40 to 365 in six months by taking iron sulfate and vitamin C on an empty stomach two times each day. This would sometimes cause a bit of stomach upset, but I have always said I must have a cast iron stomach because there are not many things that cause me stomach aches (which was great when I was traveling to less developed countries).
3 When the natural progression of my RLS went from moderate to severe, my ferritin levels were initially low, but increasing them to high levels did not seem to help very much. The high ferritin did little for my severe RLS/WED and did not prevent augmentation on pramipexole. Higher ferritin also does it seem to be delaying augmentation on Neupro.
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.

figflower

Re: Ferritin Nearing 100

Postby figflower » Wed Jun 10, 2015 3:05 am

Steve, as we age so do our dopamine receptors. So I am wondering why your RLS became severe? Is it just age related or did something else change in your life? I know that my RLS is much more readily triggered now that I have entered my 50s. One antacid, one large meal, one antihistamine will trigger it, where it never did before. Are you taking any medications other than those for RLS? Statins, beta blockers, that drug for type II diabetes? Melatonin, tryptophan, antidepressants? How is the condition of your spine? I knew one person whose RLS was triggered by intense aerobic exercise. As a matter of fact, she would feel the RLS as she was cycling on a stationary bike and have to leap off because it was so compelling. I read an article about female long distance runners and iron levels. I can't recall all of the details but the bottom line was that the running did decrease their iron availability and that their performance may be enhanced by taking an iron supplement prior to a run. Is it possible that the running is decreasing your iron availability for that day and giving you RLS? I don't think people realize how small shifts in iron in a day to day, even hour to hour basis can affect our RLS. For example, everyone's iron availability drops at night. Everyone, not just those of us with RLS. I think it's at it's lowest level around 3am and then begins to rise. The whole rest of the world is not seemingly affected by this circadian shift in iron, but maybe we with RLS are??? So you too may be affected by that slight drop in iron from running.

Rustsmith
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Re: Ferritin Nearing 100

Postby Rustsmith » Wed Jun 10, 2015 9:31 am

Figflower, I don't think that it is possible to say what the trigger was for my RLS/WED suddenly getting worse. However, it coincided with my retirement. I do not think that it was the retirement that was responsible as the RLS/WED did not get worse until a number of weeks had passed. However, for a number of years prior to retirement I was doing a lot of international travel for work. I would take a least one trip per month were I was experiencing 6 to 13 hrs of time zone changes. As a result, I was almost always experiencing jet lag in one form or another. All that stopped once I retired. So, I suspect that the chronic jet lag was covering a gradual worsening of RLS/WED that suddenly became apparent when the jet lag stopped.

It is interesting that you mentioned running. If you look at a number of my posts, you will find that I am an age group competitive runner who has been competing at distances from 800m to the marathon. I am in training for one distance or another year round. Yes, some people claim that vigorous, aerobic exercise is a trigger, but that does not seem to be the case with me. I do not see any difference between my days off and my hard workout days and either the days when I run early in the morning or during the evening.

As for non-RLS/WED medications, for years I was taking a second generation, non-sedating antihistamine. I was recently advised to discontinue it and have not seen any change that results. It was being supplemented by an anti-leukotriene inhibitor for my allergies, which I continue taking. That is it. I have never taken anti-depressants, heart medications or any of the other meds that you listed since running (and genetics) helps address many of those issues for me.

Therefore, I believe that my RLS/WED was probably slowly getting worse over the years, but that it was being covered by the effect that chronic jet lag was having on my circadian rhythm. The excessive travel played a large part in my decision to retire early, so I would say in retrospect that it was playing a role in keeping my RLS/WED symptoms at bay for many years, but the chronic jet lag is not a method that I would recommend for coping with worsening RLS/WED.
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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