Raising iron levels

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legsbestill
Posts: 320
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Location: Dublin Ireland

Raising iron levels

Postby legsbestill » Fri Mar 31, 2017 8:51 pm

I got the results of my blood test today and to my amazement my serum ferritin level had risen to just under 140. To put it in context it was 39 about a year ago. I started taking ferrous fumerate (on empty stomach with vit C). Next test it had risen to 44 - after 3 or 4 months. Then it went to 79. I was less diligent about taking the tablets for a few weeks and the next test came in at 74. My understanding was that it was more difficult to get the figure up, the higher it went, if that makes sense, so I was expecting to make slower progress now than I did originally, whereas in fact they have nearly doubled since the last test. It is not inconceivable that the results were mixed up in error with someone elses but I am not prepared to undergo another test to be sure so am going to take the figure as genuine.

The thing is there is one difference between my most recent test and the previous one. This time I was taking ferrous bisglycinate (gentle iron) and also I made an effort to take the iron every other day rather than daily because I read somewhere that the body is more likely to absorb it that way. Just thought I would post this in case it is of any help to anyone else. I was considering asking my consultant for intravenous iron, depending on the result today but now I don't think I need to.

legsbestill
Posts: 320
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Location: Dublin Ireland

Re: Raising iron levels

Postby legsbestill » Fri Mar 31, 2017 8:58 pm

Actually, that is two differences. It is difficult to be sure which, if either, is responsible for the jump but I hadn't been particularly diligent about taking the iron every day even before the previous blood tests so was already using a somewhat irregular system. Maybe my system was just better at absorbing the bisglycinate.

I hope it results in an improvement in my rls. It is difficult to tell at present as I am experiencing unpleasant restlessness as a withdrawal from oxycontin which is very similar to rls. Should know better in about 3 weeks once am completely over the withdrawals.

yawny
Posts: 165
Joined: Sun Nov 08, 2015 4:20 pm
Location: Washington

Re: Raising iron levels

Postby yawny » Fri Mar 31, 2017 10:15 pm

legsbestill, congrats on your ferritin level! I've been trying to get mine higher as well and just got my highest level so far this week of 91. I started at 33 a little over a year ago. Maybe I should try supplementing every other day too (I take Thorne brand Iron Bisglycinate with Vitamin C). Is there a celebratory treat or dance that we get/do now?! :D

Hope you're doing ok during this OxyContin withdrawal...

badnights
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Re: Raising iron levels

Postby badnights » Sat Apr 01, 2017 5:30 am

I stopped taking my iron twice a day and now take it all in a lump at night, probably because of the same posts you read. The person who posted about it showed indications of extreme bias in other areas, so I didn't feel keen to try it without first checking myself into the supposed benefits of waiting between doses, but I ended up trying it anyway because I was going through a bad patch. I don't know if it did any good, because I can't get tested very often. I use a fumarate or a sulfate. I looked into the bisglycinate but the studies that were done seemed to indicate that its absorption was no better or worse than what I was taking. Maybe like seems to be happening for you, I would absorb it better, but I haven't tried it.

Ferritin gets elevated during infection, so if you're fighting something off, the high number might be bogus.
Beth - Wishing you all restful sleep tonight
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yawny
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Joined: Sun Nov 08, 2015 4:20 pm
Location: Washington

Re: Raising iron levels

Postby yawny » Sat Apr 01, 2017 9:59 pm

badnights wrote:Ferritin gets elevated during infection, so if you're fighting something off, the high number might be bogus.


That's really interesting...it also makes me wish we could do our own blood tests at home, or through the mail, so we could time it better and do as many as we please.

legsbestill
Posts: 320
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Raising iron levels

Postby legsbestill » Sun Apr 02, 2017 1:20 am

Beth, Yes; I wondered was there something that could have caused the levels to spike. I don't feel as though I have an infection but various of my children have a cold at the moment.

I have read the posts of the person you are talking about regarding the iron bisglycinate and methods of taking iron. The tone of the posts was such that I was VERY reluctant to accept the propositions. I have also read the very informative post of Rustsmith about the difference (or lack thereof) between bisglycinate and other forms of iron so I do know that there is no scientific basis for suggesting that changing to the bisglycinate accounts for the difference in uptake in me. I merely offer my experience in case it helps others.

I got a hard time from the nurse who took my blood because I had had four tests in the last year even though I wanted my levels for the very legitimate reason of deciding whether to go back to my consultant and ask for an iron infusion. I pay for these blood tests myself - she isn't offering them as a charitable concern. I wouldn't wish lifelong rls on my worst enemy but I have a growing list of people who I would love to talk to after two or three days/nights of it and she is now on it.

legsbestill
Posts: 320
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Raising iron levels

Postby legsbestill » Sun Apr 02, 2017 1:23 am

Yawny, my celebratory treat is reading your posts.

Thanks for asking about the withdrawal. I think I turned a corner this week - feeling much more normal and sleeping a bit better. Last time it took 6 weeks but I was on a much higher dose then.

peanut1
Posts: 273
Joined: Sat Jun 04, 2011 8:06 am

Re: Raising iron levels

Postby peanut1 » Sun Apr 02, 2017 4:23 am

I will be getting tested sometime next month. I eat a high iron, paleo diet and if I get off of it even for a day, my legs pay for it.

Beth,

That is an interesting concept of taking all the iron at night. I spread out my iron throughout the day. I take an iron that also contains vitamin c and b so I don't take it right before bed for fear of getting hyped on the B. Let us know how it goes with the iron.

Kathy

yawny
Posts: 165
Joined: Sun Nov 08, 2015 4:20 pm
Location: Washington

Re: Raising iron levels

Postby yawny » Sun Apr 02, 2017 4:36 am

legsbestill, I have a list of people too...maybe we should all chip in and hire a guy? Or mail them big ol' envelopes of glitter.

So glad you've turned the corner :D

Polar Bear
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Re: Raising iron levels

Postby Polar Bear » Sun Apr 02, 2017 1:42 pm

yawny - Big envelopes of glitter is pretty good torture.
Especially the see through stuff that only catches your eye when the light hits it in a certain way. Go to pick it up and you can't find it.
It's like Ninja Glitter.
I'm still finding some that came with a 'loving' greeting card 7 days ago !!

legs - Very happy for your improvement. Not so happy about the nurse's attitude - why should she give you a hard time if the doctor has approved your blood test. I'm assuming that your GP has to authorise the blood test, or can you go direct and ask for a private blood test.
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

yawny
Posts: 165
Joined: Sun Nov 08, 2015 4:20 pm
Location: Washington

Re: Raising iron levels

Postby yawny » Sun Apr 02, 2017 7:37 pm

Polar Bear,
LOL, Ninja Glitter, exactly! Love that term. Years ago I read about a guy who started a business around glitter for those seeking revenge. He would anonymously mail an envelope full of glitter to your enemy for you. Now every time someone pushes my button, I immediately put them on my imaginary mailing list, and imagine them unknowingly receiving that ninja glitter and the hell that they suffer! My list is mostly doctors and people who don't use turn signals.

legsbestill
Posts: 320
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Raising iron levels

Postby legsbestill » Sun Apr 02, 2017 10:41 pm

I never heard of this glitter-revenge treatment. Very subtle. Though is glitter really that immune to the ministrations of the vaccuum cleaner? I see a potential flaw in the business plan of the guy who hoped people would pay him to mail the stuff anonymously. Surely it would be easier/less expensive (and no less anonymous) to mail it yourself?

badnights
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Location: Northwest Territories, Canada

Re: Raising iron levels

Postby badnights » Mon Apr 03, 2017 4:01 am

no, that glitter is evil and does not obey the laws of vacuuming.

yawny wrote:My list is mostly doctors and people who don't use turn signals.
:D :D
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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Polar Bear
Moderator
Posts: 6700
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Raising iron levels

Postby Polar Bear » Mon Apr 03, 2017 2:57 pm

Correct - ninja glitter is vacuum proof. Even on a hard floor.
I have a Dyson Cordless and it's been pulled out several times over the last week, but an hour ago there it was... a single little glistening heart - twinkling at me as it laughed.

Legs - to post the revenge glitter yourself might mean having to travel to another town to avoid showing your local postal area.
Also, another flaw in using an agent --- the agent knows !!! Which means the agent has 'power'.
A secret is only a secret if no one else knows.
Oh dear, perhaps I read too many psychological thrillers.
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

legsbestill
Posts: 320
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Raising iron levels

Postby legsbestill » Mon Apr 03, 2017 9:22 pm

You have a devious mind, PB.

I have decided, in lieu of glitter, I am going to start keeping all those horrible little plastic backs to the neupro patch. When I have an envelope full I will post it to the first medical professional to cross me thereafter.
Have just spent the evening reorganizing my bedroom and they turned up EVERYWHERE. I guess they have a glitter-like resistance to normal vacuuming.


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