Iron values: I finally went to the Dr... - Restless Legs Syn...

Restless Legs Syndrome

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Iron values

Trish8433 profile image
12 Replies

I finally went to the Dr and had my iron levels tested. My serim ferritin is 408 and my transferrin is 26%. So my basic understanding is i have to decrease the first and increase the second. How do I do this??

The issue now is that my GP has no idea what this means and how to get to correct levels. Any advice, as always, greatly appreciated. Many, many thanks.

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Trish8433 profile image
Trish8433
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12 Replies
LotteM profile image
LotteM

You don't need to decrease your ferritin levels. Only when it is much higher, it may be dangerous. Madlegs and DicCarlson (I think) are knowledgeable and the latter has a link to a good iron information website. Ferritin may be raised temporarily due to an inflammation/infection, and takes several months to settle.

Don't know about the iron saturation. It is on the low side, but not extremely so. Maybe good to have your levels checked again in a few months.

Were you taking iron up until now? How much? You can consider continuing supplementing as the feedback mechanisms usually prohibit overload. If you follow dosing instructions on the package, there should be no problem, provided you don't have haemachromatosis.

Madlegs1 profile image
Madlegs1

You're grand.

Ferritin of 400 + is perfectly ok. Even up to a 1000 would be ok.

Doctors and labs might raise a red flag at those numbers, but it would be monitored over the next few years. Just to eliminate Hemochromatosis.

This number just eliminates iron deficiency as a cause of your RLS.

If you wish to find out more about iron issues, then check out

The Iron Disorders Institute on the inet-.

Good luck.

Taviterry profile image
Taviterry in reply toMadlegs1

Just jumping in to thank Madlegs1 for the link. I'm awaiting the results of a test for iron and am wondering about my current levels of supplementation (which do seem too high). I have an appointment with an NHS haematologist jn early March and want to go with some basic understandings.

SueJohnson profile image
SueJohnson

I agree with the others. My ferritin is over 600. Your iron saturation is within the 20 to 45% so it is fine too. I would stop taking any iron supplements.

Trish8433 profile image
Trish8433 in reply toSueJohnson

As always, thanks everyone for information. It is so reassuring to know there is a bank of knowledge out there. Your support is so so very important for sufferes like me who previously tried to work our solutions by ourselves. The old saying " a problem shared is a problem halved" is so relevant to this support group.

By the way, I was not taking any iron supplements. I do try and eat very healthily. Thanks everybody. Interestingly my GP thinks this support group is wondetful@

SueJohnson profile image
SueJohnson

That's great that you have a GP that thinks our support group is wonderful. So many think they know it all and don't want any other imput.

WideBody profile image
WideBody

I guess I am confused why Ferritin is so high and TSP is so low. Did you supplement within 48 hours of the test? Did you do the test fasted and in the Morning? Ferritin rises in the presence of inflammation? Did you do any inflammation markers like CRP and SED test?

Do you have any inflammation?

Finally, did you check your Vitamin D levels?

Trish8433 profile image
Trish8433 in reply toWideBody

Thank you for responding.

No I don't take any supplements at all, including iron.

I fasted and did the test at 8am in the morning.

I have had terrible inflamation in my left shoulder for the past 12 months ( came on after a bout of covid them pneumonia ). I finally have this under control with Injections and physio but in the last 2 months the inflamation has gone to my right foot. For NO reason. The Dr has just put me on a strong dose of antibiotics/anti inflamatory to try and fix this. It was very clear from an MRI.

Logic tells me I somehow have to increase my TSP, but have no idea how to do this. Others on this link seem ti think I shouldn't be worried.

Also having reported a week ago that I was doing all the right things and going fantastically, my Rls is now rampant and NO sleep for last three days. This may be as a result of me cutting the pramipexole from 0.025 to every alternate night taking nothing. I hope to be totally off pramipexole in three weeks. It has been a very slow process for two years and I am at the very end of that process.

I could not cope without this online support.

Vit D fine.

WideBody profile image
WideBody in reply toTrish8433

I totally understand about trying to raise your TSP. I also think 400 is high (personally), I also think your ferritin is artificially high because of it. I would definitely keep supplementing with iron and Vitamin C.

What I did, was to look at anything that would affect iron absorption, metabolism and homeostasis. Vitamin D is up there as a potential. Vitamin D aids in iron absorption. It has been harder for me to raise my Vitamin D than to raise my ferritin.

Taurine and Oxidative Stress: Iron overload can generate oxidative stress, and taurine, with its antioxidant properties, might protect against this damage in tissues like the heart . This protective effect could indirectly impact iron metabolism.

ahajournals.org/doi/10.1161...

Membrane Stabilization: Taurine can stabilize cell membranes, potentially influencing iron transport across cell membranes (source: 6). However, this role in iron homeostasis requires further investigation.

I also take calcium and magnesium. I am older so I think it helps prevent osteoporosis

Good luck.

SueJohnson profile image
SueJohnson in reply toTrish8433

Inflammation would cause your ferritin to go up so once that is under control I suggest you have your ferritin tested again.

And don't take pramipexole every other night - that is probably why your RLS plus the fact that you are trying to reduce too much. To come off pramipexole, reduce by half of a .088 tablet) every 2 weeks or so. And as you get close to the end the symptoms get worse. Wait until the increased symptoms from each reduction has settled before going to the next one.

Trish8433 profile image
Trish8433 in reply toSueJohnson

You are a gem. Thank you. I will do as I am told and let you know how I go. I dont know what I would do without this support.

Sleeplessinbitola profile image
Sleeplessinbitola

I am very confused.I thought there's 2 types of iron tests.

Serum Ferritin and Brain Ferritin (I think??)

Am I mistaken??

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