Slow progress getting ferritin up... any advice?

[howbeit-abroad]

Previously: healthunlocked.com/rlsuk/po...

Have taken iron for the last three months - 75mg iron (as bisglycinate) every evening with 500mg Vitamin C.

Ferritin levels have gone from 25 to 57 to 81µg/L, so they're definitely getting there slowly. I believe   Joolsg gave some advice on ferritin needing to be above 100 (or 200 or 300!) for symptoms to resolve. They do seem to be improving gradually over the last few months, though I have a few days where they're bothersome, along with annoying leg twitches, sometimes starting first thing in the morning.

Neurologist seemed to think that the cause was low iron (but was perplexed as to why my iron was low in the first place) and suggested continuing with the iron until January and then having another test.

(I did trial a couple of days of no sertraline - usually I take 100mg daily - and noticed no change)

Should I just keep on with the 75mg iron bisglycinate nightly? Is there some way I can improve absorption - a different form of iron, different dosing etc? I take it on an empty stomach just before bed, usually.

Thanks!

[SueJohnson]

Iron isn't absorbed as well above 75. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. Also antacids interfere with its absorption.

[ChrisColumbus]

This IS a slow process - guidelines suggest to start having levels tested after 3-4 months indicating this - and then absorption of oral iron does slow above 75μg/L.

Iron infusions are recommended above this level, but these aren't readily available everywhere.

UPDATE: I see SueJohnson has given you some tips on things that could be slowing absorption...

[ChrisColumbus in reply to ChrisColumbus]

Getting to 200μg/L. would be excellent, but over 100μg/L. helps the majority - so you're getting there!

[howbeit-abroad in reply to ChrisColumbus]

Thanks so much for the reassurance - I appreciate it.

[WideBody]

Did you check your Vitamin D levels? Vitamin D blocks Hepcidin. Hepcidin blocks iron absorption. If your Vitamin D is low, consider taking Vitamin D with a fatty meal. This really helped my iron absorption.

[howbeit-abroad in reply to WideBody]

GP tested them recently as it happened - just checked and they're at the very bottom of the reference range, so that's something to address. Thanks for the tip!

[Hidden]

It’s hard to imagine you will ever be RLS free as long as you are on an SSRI. They’re probably the worst of the pharmaceutical triggers. You might be able to get by in your 20s, 30s and even 40s, but not past that if you’re pre-disposed to RLS. Ask your doc about trazodone - it’s RLS friendly. It will probably take more than a few days for the SSRI to clear from your system and stop aggravating the symptoms of RLS. On the bright side, SSRIs do not make our lousy dopamine receptors worse which is the underlying cause of RLS. As a matter of fact, since SSRIs are dopamine antagonists (just the opposite of the evil dopamine agonists) they may actually up-regulate our receptors - albeit temporarily.

You should also try taking the iron the second you feel the RLS coming on, even if that’s the morning. If you’re like me, the RLS will be gone in about an hour.

[howbeit-abroad in reply to Hidden]

it’s a shame they help me so much. I stopped taking sertraline for three days, in which time I would expect its concentration in the blood to fall considerably - but no improvement in RLS symptoms. Or is that not surprising?

[Simkin]

I am in exactly the same positionasyouare iron/ferritin.I had another blood/ferritin yesterday to see if I am creeping up.

I have just written to my GP to ask if he would consider an iron infusion.

[howbeit-abroad in reply to Simkin]

How did you get on? Am considering seeing a specialist just to get a referral for an iron infusion as I desperately want this to be over.

[howbeit-abroad in reply to howbeit-abroad]

I’m also sick to death of taking fistfuls of iron tablets and all the GI side effects they give me (most diarrhoea and gas)

[Simkin in reply to howbeit-abroad]

My GP says my ferritin levels have risen from 45 to 120 so he says I do not need an infusion.

[Munroist]

Some doctors and published advice recommend taking a double dose of iron every other night still with vitamin C. There is a plausible theory that this reduces the tendency of hebcidin to restrict the iron intake. Using this method my ferritin went up from 75 to 140 which seemed to help a little bit but my RLS is still present and still wakes me up.

[howbeit-abroad in reply to Munroist]

Thanks so much, I might try that. So perhaps 140mg (or ten of those 'gentle iron' tablets) every other night?

[SueJohnson in reply to howbeit-abroad]

Anything above 75 mg is less absorbed. Instead take 75 mg every day, but take it at the same time since it is less absorbed if taken less than 24 hours apart.

[Munroist]

I take 2 60 mg capsules every other night which I believe still leaves me under the maximum per day, but it’s probably best to check

[SueJohnson in reply to Munroist]

See my reply to howbeit-abroad.

[Grammieof4]

maybe time for an iron infusion. I’ve had 2 since 2015

[howbeit-abroad in reply to Grammieof4]

Thanks. What’s the best way to go about getting one? Just request through my GP or is that unlikely to work?

[Grammieof4 in reply to howbeit-abroad]

Are you in the US? I see an RLS specialist at Hopkins. He follows me.

[howbeit-abroad in reply to Grammieof4]

Gotcha. I'm in the UK; things are probably a bit different here. Seeing a specialist soon so hopefully they'll recommend an infusion.

[marsha2306 in reply to howbeit-abroad]

from what I’ve read on this site it’s difficult to get an iron infusion. Good luck!

[howbeit-abroad]

Thanks again all for the help. Ended up getting an iron infusion privately in London (1000mg of Monofer by IV) which hopefully will do the trick!

In future I'll have to be careful to keep my iron levels up with supplementation - I assume it's being vegetarian that caused my levels to drop so much and trigger the RLS (the doctor was surprised to see a man come in for an iron infusion!).