Advice needed on iron levels (plus an update on Targinact)

[Claire_lc]

Hi everyone,

I posted recently asking for advice about Targinact, which I started taking on 10 January. I had such an extreme and horrible reaction that I stopped taking it 15 days later. Given my dose was only 5/2.5mg daily, I haven't had any withdrawal issues other than feeling very tired and depressed, and even those are now lifting. I'm incredibly grateful to everyone in the community who sent advice and encouragement.

It's worth noting that I restarted pregabalin immediately after taking my last Targinact pill. My RLS has been manageable since, making me realise just how helpful pregabalin is. I mentioned in my previous post that I'd weaned myself off pregabalin in December last year, and it was three weeks later that my symptoms went through the roof (which is what made me think I needed something stronger). Sometimes it's only when you stop taking a drug that you realise just how well it was working!

Since then I've had my iron/ferritin levels rechecked (after a 3-month course of Ferrous Sulphate), and I know that both SueJohnson and Joolsg have kindly offered to look at blood results and advise on the best course of action. If anyone has any thoughts on these results I'd be very grateful. I'm hoping they might point to the need for an iron infusion, and I need ammunition as my GP may take some persuading.

Thank you all in advance.

Serum iron level: October 23 - 7.7 umol/L; January 24 - 21.5 umol/L

Total iron binding capacity: October 23 - 45.9 umol/L; January 24 - 51.4 umol/L

Serum ferritin: October 23 - 237 ug/L; January 24 - 624 ug/L

Transferrin saturation: October 23 - 16.8%; January 24 - 41.8%

[Madlegs1]

Great progress.

It is extremely unlikely that you will be offered an infusion with those iron levels.

Many doctors might panic at serum ferritin of 624, but that figure is ok. For RLS.

It also indicates that your RLS is not linked to iron levels.

I'm not expert enough to comment on the other figures, but am thinking they indicate quite high iron retention. If it was my figures, I would stop supplementing iron, and get advice from the Iron Disorders Institute. Google them.

You should seriously look at possible triggers such as medications and food/ drinks.

All the best.

[Claire_lc in reply to Madlegs1]

Thank you Madlegs. I'll discuss the figures with my GP and mention the Iron Disorders Institute.

[SueJohnson]

Your figures are fine and I would stop taking iron. All are within the normal range. Your ferritin is on the high side but mine was 608 and my doctor just told me to stop taking iron.

[Joolsg]

All your iron results are fine EXCEPT serum iron, which experts believe should be above 60. Your serum ferritin is now 624ųg/L , but was 237ųg/L in October. As you haven't had an infusion or taken iron supplements, that would indicate an infection at the time you had bloods taken in January. Did you have a virus?You will not get an NHS iron infusion with those serum ferritin levels.

I suggest you ask for repeat iron tests and ensure you fast overnight, stop iron supplements 48 hours before and get the tests early in the morning.

It would appear that the Jan ferritin results are falsely elevated.

I'm so pleased to hear that restarting pregabalin is working well for you. It takes 4 weeks to be fully effective. Average dose for RLS is around 150mg.

[Claire_lc in reply to Joolsg]

Thanks Jools. I definitely fasted overnight and got the tests done early morning. But I have had a virus (although not Covid) in the last couple of weeks, so you're right about the infection.

I'll ask for another test in a few weeks when I'm completely over the illness.

What would you advise I do about the low serum iron?

[Joolsg in reply to Claire_lc]

It's highly unlikely that you'll get an iron infusion on the NHS with serum ferritin above 237ųg/L. But you could try emailing the results to the Iron Clinic in Harley Street and ask whether they would consider a private iron infusion if serum iron is below 60.

[Claire_lc in reply to Joolsg]

Thanks so much Jools. I'm seeing my psychiatrist next week so will mention this to him. Really helpful to know about this clinic. You are a mine of information!!!!!

[Joolsg in reply to Claire_lc]

Professor Toby Richards who runs it is an ally. He is very aware of the benefits of iron for RLS and how safe modern formulas are. He explains that pregnancy depletes most women's iron stores.He will arrange iron infusions at his clinic for around £800.

Infusions do NOT help everyone, especially if dopamine agonists have been prescribed beforehand.

[SueJohnson in reply to Claire_lc]

You need to wait at least 4 weeks after an infection to be tested again and I have even seen 6 weeks . However with an infection a low Transferrin Saturation is a good indication if you need iron and yours is not low so it is unlikely you will need iron nor an infusion.