Ferritin Update

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TimG
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Ferritin Update

Post by TimG »

At my Annual Medicare Wellness Exam my labs showed a Ferritin of 135, which is the first time it's been above 100 after several years of oral iron supplementation (Initial ferritin value was 19). Still using pramipexole 0.125 mg as needed -- 1 or 2 times weekly

Polar Bear
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Re: Ferritin Update

Post by Polar Bear »

To confirm, are you saying that you have only used oral iron supplementation to raise Ferritin from 19 to 135. I can only say this is wonderful. How many years have you been taking the oral supplement.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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Rustsmith
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Re: Ferritin Update

Post by Rustsmith »

Tim, it is good to hear that someone else was able to dramatically increase their ferritin levels by being persistent with just oral iron. At one point, I was taking it three times a day, all carefully spaced between meals and over a period of about five years I was able to go from 42 to 650. Unfortunately, it didn't help with my RLS. Once I hit 650, I was advised to stop taking it and my ferritin gradually dropped back below 100 after about four years. So I am back to taking it even though it doesn't help my RLS. It only satisfies my doctor's need to have something to tell me to do :lol: .
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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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Re: Ferritin Update

Post by Polar Bear »

I had taken the oral iron supp!ement for about 3 years with no difficulty. My ferritin raised from 47-52.
I was also taking codeine phosphate and have done so for about 12 years with no difficulty.
All of a sudden I developed really bad agonising constipation. Reckoning it was one of these two drugs I stopped the iron as there was no way I'd stop the codeine. I reckoned it was the iron as it was the most recent albeit not very recent.

Still constipated..... and eventually I now take a mild laxative every 3-4 days. I have no idea why the constipation just started up suddenly and indeed continues.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: Ferritin Update

Post by TimG »

I've been taking an oral iron supplement for about 7 years. I still get breakthrough RLS, but am lucky that the increased ferritin value has mitigated my RLS.

badnights
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Re: Ferritin Update

Post by badnights »

TimG wrote:
Sat Apr 23, 2022 8:48 pm
I've been taking an oral iron supplement for about 7 years. I still get breakthrough RLS, but am lucky that the increased ferritin value has mitigated my RLS.
Beautiful. Like stories like this.
Beth - Wishing you a restful sleep tonight
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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: Ferritin Update

Post by ViewsAskew »

TimG wrote:
Sat Apr 23, 2022 8:48 pm
I've been taking an oral iron supplement for about 7 years. I still get breakthrough RLS, but am lucky that the increased ferritin value has mitigated my RLS.
Wish this for everyone!
Ann - Take what you need, leave the rest

Managing Your RLS

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Msbeck6067
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Joined: Sun Oct 10, 2021 4:21 am

Re: Ferritin Update

Post by Msbeck6067 »

I was diagnosed with RLS less then a year ago. My ferritin was at 20 and is now above 50. I have been taking 26mg of iron bisglycinate. This type of iron seems to work good without the side effects of constipation or stomach distress. My integrative doctor recommended that I add 300 mg of Lactoferrin with my iron. The lactoferrin was a game changer. The Lactoferrin really started boosting my iron levels. Be sure to take the lactoferrin from bovine milk protein. I use Ecological Formulas. I rarely have any symptoms and if I do, they are not disruptive. I was on the webinar yesterday about Intravenous iron. The doctor did mention something about taking oral iron every other day for better absorption. I’m wondering if anyone else has heard this?

Polar Bear
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Re: Ferritin Update

Post by Polar Bear »

Congratulations on your great result from the Lactfoferrin. We always like to hear (or have a reminder) of what is working for another sufferer.
I'm sure I have heard before that there is an advantage of taking iron on alternate days. Perhaps it was to make it easier on the side effect of constipation.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

jumpy leg
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Re: Ferritin Update

Post by jumpy leg »

Please can you tell me what iron & dose do you take? My ferritin is dropping as Im trying to eat less red meat. - Jumpy Leg.

Rustsmith
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Re: Ferritin Update

Post by Rustsmith »

jumpy leg, the recommended oral iron therapy is to take 365mg of iron sulfate each day combined with vitamin C. This should be taken on an empty stomach, which normally means mid-morning or mid-afternoon.

However, iron sulfate can be hard on the stomach for some of us. If you check at a health food store, you can often find products with names like gentle iron or slo iron, which are other iron compounds, such as iron glycinate. These do not need to be taken with vitamin C and the dose should be similar to that of the iron sulfate, which may also be listed as 65mg equivalent of iron. These should also be taken on an empty stomach to maximize the amount that you adsorb.

Finally, do not take other meds, such as calcium, magnesium or zinc supplements or thyroid meds at the same time as the iron, even though these should also be taken between meals. Calcium, magnesium and zinc will interfere with the ability of the intestines to adsorb the iron and iron reacts with levothyroxin so that the cancel each other out.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

badnights
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Re: Ferritin Update

Post by badnights »

Msbeck6067 wrote:The doctor did mention something about taking oral iron every other day for better absorption. I’m wondering if anyone else has heard this?
Yes, I've heard of it. The lower the iron levels in your blood, the more iron can cross from your gut into your blood. It didn't seem to work for me, my symptoms gradually got worse until I resumed taking it every night, then they gradually got better.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Stainless
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Re: Ferritin Update

Post by Stainless »

I tired recommended oral iron therapy 365mg with C religiously for a year. It was hard on my empty stomach. Then I quit and had a good RLS run for weeks. Never sure that is not just part of a RLS cycle. I want to try it again but maybe a lower dose, less empty stomach. My Ferritin is not low but I have few options to improve my condition. An MD implied this on a RLS seminar for sufferers with normal ferritin.

golfer904
Posts: 7
Joined: Sat Jun 12, 2021 11:00 am

Re: Ferritin Update

Post by golfer904 »

Msbeck6067 wrote:
Sat Jun 18, 2022 2:17 am
I was diagnosed with RLS less then a year ago. My ferritin was at 20 and is now above 50. I have been taking 26mg of iron bisglycinate. This type of iron seems to work good without the side effects of constipation or stomach distress. My integrative doctor recommended that I add 300 mg of Lactoferrin with my iron. The lactoferrin was a game changer. The Lactoferrin really started boosting my iron levels. Be sure to take the lactoferrin from bovine milk protein. I use Ecological Formulas. I rarely have any symptoms and if I do, they are not disruptive. I was on the webinar yesterday about Intravenous iron. The doctor did mention something about taking oral iron every other day for better absorption. I’m wondering if anyone else has heard this?
Does lactoferrin need to be taken with vitamin C? Thanks.

badnights
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Re: Ferritin Update

Post by badnights »

Does lactoferrin need to be taken with vitamin C? Thanks
.I can't find a definitive answer but it seems like no.
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.

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