Iron

[Jademarie1]

Okay update. My ferritin came back as 58 and iron at 114. I’m not any better or worse than when my ferritin was in the 100s. Should I keep taking oral iron to increase it before considering the IV again ?

[Hidden]

I think the idea is you only have an IV if oral iron doesn’t increase ferritin. And I learnt on this sire that taking iron every 2nd day is best as this aids absorption.

[Munroist in reply to Hidden]

It’s difficult to be sure but I managed to raise my ferritin from 75 to 140 using the alternate night two tablets method and I do believe I’ve seen an improvement in my restless legs, I am still woken but I am much less twitchy. Many people on this site have said it is worth persevering because the benefits take a while to come through and it feels like that to me though it’s very difficult to be sure. I am in the process of trying to get an infusion because I don’t think I will be able to get my iron levels higher with supplements but I have now come up against the standard NHS position that my iron is fine and they can give me dopamine agonists if I really want. This is the hard bit now, educating them that iron levels for RLS sufferers are not the same as for normal people. It’s very frustrating that they don’t want to try to address the root cause but instead send me on a course of pharmaceuticals which were not designed for RLS and will eventually lead to augmentation and on the way other problems like impulse control issues. I’m lucky that my RLS is not too severe otherwise I would really be struggling at this point.

[Hidden in reply to Munroist]

I know, it’s utterly awful that DA’s are still being peddled & not enough is known about the iron story.As much campaigning as possible is needed but folk are still coming up with how.

I wouldn’t touch a DA with a barge pole!

Someone or some group will have written a guideline for GP’s - there are guidelines for all sorts these days - and any deviation from these guidelines is very difficult to do in practical terms. Prescribing is getting more rigid with eg health board funded pharmacists checking & questioning practice prescribing as well as community pharmacists. This has a beneficial side but also a big downside in preventing free thinking.

[Jademarie1 in reply to Hidden]

I’m 21 years old and RLS hit me like a train. It’s constant all the time but bad bad at night. I’m trying to boost my iron orally to like 75-100 before getting another infusion but I took DAs for 2 months and while I didn’t have severe augmentation like many on this page, it started losing efficacy quickly and when I took more the symptoms persisted and spread out. So I stopped right away since I was on it for such a short time. It’s so frustrating! They are prescribed all the time even though most people will augment or have it stop working

[Hidden in reply to Jademarie1]

It sounds awful and really hard to deal with. I don’t recall the replies of others but it is pretty unusual to have it at that level of severity at your age & so suddenly unless you are pregnant - even then wouldn’t expect so bad - without a cause ( apart from low iron )Have you started taking any new tabs, either prescribed or over the counter. Some medicines can cause RLS

[Jademarie1 in reply to Hidden]

No this will sound strange but I had to get a large series of vaccines before starting nursing school. We’re talking like 5 different ones in a week and something just happened like my neurological system went haywire. I never took any meds at all before and It’s no different now when I’m drug free. I’m hoping eventually it’s more moderate because it does seem unusual compared to the stories of most people on here

[Hidden in reply to Jademarie1]

That sounds really horrible for you. Hope it settles soon.And all the best for your nursing studies

[Jademarie1 in reply to Hidden]

es I’ve been doing the supplements every other day with vitamin c since I’ve heard people suggest that. All meds I’ve tried either failed or worked briefly then failed but my RLS is very severe currently, so I’m at least trying to boost that iron to an acceptable level

[Hidden in reply to Jademarie1]

Same for me - so frustrating

[WideBody]

What was your Transferrin Saturation Percentage? If TSP is low, less than 20% it may indicate anemia. It’s called Iron Deficiency Without Anemia.

I would want to know that before making any decisions.

[Jademarie1 in reply to WideBody]

Ferritin is now 58 and iron saturation % is 31. My RLS was just as bad when the iron was around 100 ish but I know my levels are too low for RLS now. I’ve been taking supplements the last couple weeks to try and get it to 75-100 before considering an infusion again

[WideBody in reply to Jademarie1]

I am not a doctor, just a fellow sufferer. I can’t tell you what to do, just my experience.

I took liquid ferrous sulfate every day for a year, my ferritin went from 7 to just over 200. It had no effect on my RLS.

18 months later, I got an infusion. There is no doubt in my mind that I will not let my ferritin go below 200 ever again. It is also very easy (for me) to do with oral supplements. I currently get a blood test every 4 months.

In answer to your original question, I would not hesitate to get the infusion.

[Hidden]

Hello,

sorry for the delay in replying, I must have missed your post.

The recommendations for iron therapy state that if your ferritin is below 75 then you can take an oral iron supplement.

An IV iron infusion is recommended if your ferritin is over 75 but less than 100

These guidelines are evidence based

follow this link

sciencedirect.com/science/a...

As yours is less than 75, based on this evidence I'd advise you start a supplement if it is safe for you to do so (transferrin saturation below 45%).

It also seems as if your ferritin gets stuck between 75 and 100, then another infusion may help.

The 75 number is also mentioned in the UK National guidelines for GPs on RLS (NICE CKS for RLS 2020). These were first published over ten years ago and were updated las year.

I usually base any advice I give on these evidence based guidelines, I find them very informative.

Unfortunately, I've found that whereas these guidelines have been specifically published for GPS, I;'e never actually comes across a GP that's heard of them, I also note numerous examples on this site of doctors contradicting the guidelines.