Ferritin levels: I've been given blood... - Restless Legs Syn...

Restless Legs Syndrome

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Ferritin levels

Zumbadi profile image
19 Replies

I've been given blood test results for serum iron level, saturation ironbindng capacity and serum TIBC. I'm not sure which of these is significant for RLS ad what level they should be.

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Zumbadi profile image
Zumbadi
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19 Replies
SueJohnson profile image
SueJohnson

You want your iron saturation to be between 20% and 45%. Assuming that is the case, and it generally is, the most important number is your ferritin. Did they test for that? A normal iron test doesn't.

Madlegs1 profile image
Madlegs1

If you are willing to share your test results, then we can comment.

Zumbadi profile image
Zumbadi in reply toMadlegs1

OK thanks :

Serum iron level 12 umol/L (abnormal)

Saturation iron binding capac 22% (normal)

Serum TIBC 54 umol (normal)

My doc has put me on Ferrous Fumarite 210mg once a day.

Madlegs1 profile image
Madlegs1 in reply toZumbadi

Serum ferritin?

SueJohnson profile image
SueJohnson in reply toZumbadi

OK the saturation iron binding capacity is the same thing as transferrin saturation. However, just as I suspected they didn't test your ferritin. And that's what's most important for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. I would ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. Take your iron tablets with 100 mg of Vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. If you take it once a day, be sure to allow 24 hours between it.

Zumbadi profile image
Zumbadi in reply toSueJohnson

Very many thanks. I’ll speak to my doctor.

in reply toZumbadi

The LAST thing I would do is run for an infusion as is suggested on here by some. If you watch the video posted by Widebody then you will see that you need to get your ferritin up to around 600 to have the same amount of “brain” iron as a non-RLS person has with ferritin of 100. Especially in light of the fact you have PD I would not run for an infusion.

I would listen to your doctor and take the ferrous fumarate (though I prefer ferrous bisglycinate because it is more bioavailable) and I would take it one hour before bed on an empty stomach, possibly with some vitamin c.

I take one 25mg capsule of ferrous bisglycinate before bed and it rids me of RLS for the night. Must be repeated every night. Many people get immediate relief from RLS this way yet some on here refuse to tell people to give this a shot first. I guess it’s an ego thing. There’s a sound scientific explanation for why this works, but too long to get into. If I were to take the iron in the morning or even afternoon it would do nothing for my NIGHT time RLS.

Zumbadi profile image
Zumbadi in reply to

Thank you. That's helpful.

in reply toZumbadi

Here’s a description and example. healthunlocked.com/rlsuk/po...

in reply toZumbadi

Here’s another. healthunlocked.com/rlsuk/po... Both these women lovely and always willing to answer questions.

Butterflysun1 profile image
Butterflysun1 in reply to

I also don’t think any clinician would agree to giving an infusion until it had been shown that oral iron had not been effective.We can demand as much as we like but the legal ability to prescribe holds the key - which is a problem if precribers just refuse to listen/read expert advice!

Graham3196 profile image
Graham3196 in reply to

Why do you put iron infusion last on your list of treatments? There seems to be evidence that iron is an effective in more than 50% of cases.

in reply toGraham3196

Hi Graham, I explain in my first reply to Zumbadi.

Zumbadi profile image
Zumbadi in reply to

I should have mentioned I have PD. You must have picked it up from my profile.

DicCarlson profile image
DicCarlson

More on iron tests here...

bloodtestsresults.com/iron-...

WideBody profile image
WideBody

Some Doctors think that Transferrin Saturation Percentage is the the most important number. ( Dr Christopher Earley, Iron RLS webinar) yours is border line infusion needed. If it was under 20%, an infusion should be considered.

Yes you are low and I don’t care what your ferritin is. I would place HEAVY bets that your ferritin is low. Did you check your Vitamin D too?

Section 8.3, from memory

pubmed.ncbi.nlm.nih.gov/294...

Great video to watch, it goes fast.

youtu.be/VVlQKOOrRVs

Joolsg profile image
Joolsg

The good news is that you will probably be able to resolve your RLS by taking iron supplements. If your serum iron is 12, it's likely your serum ferritin will also be low.You may be able to push for an infusion of Injectafer as that raises levels faster than oral supplements. It's easier to get in the USA but is possible here in the UK.

Zumbadi profile image
Zumbadi in reply toJoolsg

Many thanks.

Eryl profile image
Eryl

One important thing to know about iron levels is that its avaiability depends on inflammation and that systemic inflammation and autoimmune issues are highly dependant on diet. youtu.be/DbQeaivmgb4

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