Hi I’m just wondering how long people in the uk have waited for an iron infusion.
I requested an iron infusion months and months ago as I can’t tolerate iron orally. Unfortunately my doctor forgot to put me on the waiting list and only amended that about a month ago after I mentioning that I was waiting for a infusion to an other doctor. My levels are are down at 5 so I feel pretty rubbish.
That will depend on your local hospital waiting list.I had mine pretty quickly in 2019, but that was pre Covid and pre NHS crisis.
I suggest you write direct to the haematology department, explaining the error by your GP surgery and how bad your RLS is now.
Have you tried Ferrous bisglycinate? Sold as 'gentle iron' in Health shops and chemists. It's gentler on the stomach and is best taken at night.
Are you still taking Pramipexole or did you start the reducing it as per SueJohnson advice?
I’m still taking the same dose of pramipexole and more often than not it works . The anemia is causing a whole host of other issues though hence my question on timings. I’ll definitely write to the haematology department.
healthunlocked.com/rlsuk/po...
Please read this post and watch the video by a top US expert. He makes it clear that EVERYONE will experience augmentation on Pramipexole and Ropinirole. It's simply a matter of time. As your RLS has worsened while on Pramipexole, you are already in augmentation.
Also read Ruffabug's recent post advising everyone to get off these drugs while they're younger and fitter.
healthunlocked.com/rlsuk/po...
It's your choice to stay on Pramipexole, but the RLS will inevitably worsen as your D1 dopamine receptors are overstimulated and it's easier to go through brutal withdrawal when you're younger.
There are effective treatments out there and I know at least 3 people who are off dopamine agonists and their RLS is controlled by iron infusions or iron pills to raise brain iron.
I had 1 on Monday but that's because my iron keeps falling inspite of taking oral iron.There shouldn't be a waiting list ,they ring through to SDEC same day emergency care and you go that day ....5 is dangerously low ,I'd be going back and asking for same day emergency care .x
just a quick update the doctor told me yesterday that her referral for an intravenous iron infusion has been rejected due to NHS long waiting lists, lack of funds and because my anemia is due to menorrhagia.
What??!!! Because it is due to menorrhagia? I.e. a minor 'womens thing' of some sort? Hence not serious? I get so angry about these things. Here in The Netherlands, finally a group of woman doctors (gynaecologist, cardiologist and psychiatrist) has start to take and call for more action to make doctors takes womens health issues more seeiously. Diesn't help you though.
Anywhere you can go to complain? Because of the cause, which is constant/recurring and doesn't resolve by itself, your anemia won't resolve by itself either. Of you can, fight for yourself. And get help, by a partner, offspring, friend.
I’m going to see if I can go private. The doctor said she would happily write a referral. I’m furious but the NHS is on its knees so I very much doubt complaining will do anything. If I don’t get any successful treatment I’ll kick up a fuss with local MP’s and the press.
Neurologist/Iron infusion
IV Iron Infusion for RLS
Iron in the Brain not in the Blood
Floradix liquid iron supplement 
Iron Infusion - Ireland
