iron panel - almost normal? - Restless Legs Syn...

Restless Legs Syndrome

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iron panel - almost normal?

daisydaisy26 profile image
6 Replies

Dear everyone, if anyone can comment on my mother's iron panel results: ferritin 97 mcg/l (lab norm: 10-120 for women), iron 14.30 µmol/l (lab norm: 9.0-30.4), transferrin 2.91 g/l (lab norm: 1.90-3.75 g/l), transferrin saturation 19.6 (lab norm: 8-50), latent iron-binding capacity 45 µmol/l (lab norm 12.5-55.5 µmol/l). Doesn't look so bad, but RLS is not well controlled at the moment (0.375 mg pramipexole, 1200 mg gabapentin, occasionally clonazepam 0.5 mg on top of that). She can't tolerate ferrous sulfate - it causes diarrhea for her. Plus she went off Cymbalta, first she had like four days without RLS in a row, but then it returned, probably because her mental state is absolutely off - she wants to cry all the time, is upset and achy😔I noticed that 4 years ago her ferritin was 114, and then RLS was not at all that bad. Should we push for an i/v iron? I saw recommendations here to keep ferritin as high as 300, but it will be above the norm, won't it? or it doesn't matter for RLS people? Thanks 😍

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SueJohnson profile image
SueJohnson

She is close to 100 which she wants to be at or over, but her transferrin saturation (TSAT) is below 20% so yes I would push for an iv infusion.

Joolsg profile image
Joolsg

Hi Daisy,The bloods are low for RLS. Serum iron should ideally be above 60. An iron infusion would raise the iron BUT wouldn't stop the intense RLS.

The problem of augmentation on Pramipexole is still there. 3 x .125 ( 0.088) is high. The RLS will never settle until she's off it.

Have a look at Dr. Winkelman's article as it explains why her RLS is so intense, causing her to feel suicidal.

It is possible to withdraw slowly and the sooner she starts, the sooner she'll get off it. Her RLS will then be less intense and the pregabalin or gabapentin can be increased. She may need a low dose opioid like codeine, tramadol or oxycodone to help handle the intense withdrawal symptoms.

Have another look at all the articles on augmentation. She clearly has it. The Pramipexole is making the RLS worse.

sleepreviewmag.com/sleep-tr...

ChrisColumbus profile image
ChrisColumbus

Both ferritin and transferrin saturation are below the bottom end of target for RLS sufferers. Serum ferritin of 100+ is a minimum target - 200+ is better - and the transferrin saturation target is between 20 and 45. What medics say is 'normal' is invariably too low for RLS sufferers - at least for those where low brain iron levels are the cause of their RLS.

As Sue Johnson Replied against your previous Post, your mother may tolerate ferrous bisglycinate where she can't tolerate other forms of iron: it's branded as 'Gentle Iron' for a reason!

An infusion (or a series of infusions) may raise iron levels more quickly, but this doesn't suit everyone. And depending on where you are it can be difficult to get an infusion if the patient isn't anaemic. But you may have already looked into this.

And in any case boosting iron levels doesn't resolve RLS for everyone. There can be other resolutions and triggers: a magnesium supplement stopped my RLS rather than iron (as long as I don't binge too much on sugary foods, or diet food or drinks containing artificial sweeteners, or caffeinated drinks....) Others have other triggers.

Various over-the-counter and prescription medications can also trigger RLS: statins were my bete noire. Hopefully previous Replies to your earlier Posts have covered this.

As far as the drugs being taken for RLS go I'll leave it to Sue and others to advise as I have no experience with them.

SueJohnson profile image
SueJohnson

Or she could take the ferrous sulfate with food which will lower the absorption rate and take longer to raise the ferritin but should help prevent diarrhea. If she takes magnesium or calcium (including in food) she should take them at least 2 hours apart since they interferes with the absorption of iron. She shouldn't take tumeric as it can interfere with the absorption of iron. Also antacids interfere with its absorption. If she takes thyroid medicine she shouldn't take it within 4 hours. 300 ferritin is fine. What's normal for others is not normal for those of us with RLS so if she could get it that high, it would be fine.

SueJohnson profile image
SueJohnson

If your doctor balks at an iron infusion, you might want to point out that when her ferritin was 114 her RLS wasn't that bad. Also you could print out the section of the Mayo Clinic Updated Algorithm on RLS that mentions infusions are recommended it unable to tolerate iron.

Since her RLS is not well controlled you might want to consider raising her gabapentin. According to the Mayo Clinic Updated Algorithm on RLS, Most patients require 1200 to 1800 mg of gabapentin. She might ask her doctor for 100 mg capsules and increase it by 100 mg every couple of days until she finds the dose that works for her. She should take 600 mg 1 to 2 hours before bedtime, 600 mg 4 hours before that and the remainder 6 hours before that. However, since she is still on pramipexole it won't work as well as it would if she were off it.

The Mayo Clinic article is at Https://mayoclinicproceedings.org/a...

DicCarlson profile image
DicCarlson

Joolsg is spot on - it's the Pramipexole and augmentation is the real culprit. Always counterintuitive that the drug that provided - in many cases - years of relief, now is the devil.

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