Continuation of RLS with GP.
Ferritin levels are 50, normal apparently!
I take Ropinirole 4mg and 210mg iron tablets to try and raise Ferritin.
The GP keep stating that my levels are normal and there was very little she could do or suggest…her knowledge was very limited.
How would you continue this conversation with her?
I was in tears on the phone.
UK doctors are not taught about RLS and most guidance from NHS and NICE is out of date. SueJohnson and Joolsg 's advice in response to your first post advised on:
1. The need for iron supplementation (which at least you are now receiving - I'm guessing using prescribed ferrous fumarate?)
2. The need to - and advice on how to - come off ropinirole VERY SLOWLY and to transition to gabapentin or pregabalin. Your doctor is unlikely to know how slowly this needs to be done, so follow/pass on their advice. I'm linking you back to this below:
Oh my god. Has your GP never heard of NICE ? Both the NHS and NICE have issued guidance on RLS. The RCGPs assured RLS-UK that GPs would refer to NICE and NHS guidelines.
Even though they're both out of date, they DO state that serum ferritin below 75ųg/L requires iron pills!
As you are taking ferrous fumarate, that's a start.
You can also get a private iron infusion from the Iron Clinic in Harley Street for £800. You just send your iron panel results to them.
Did you discuss getting off Ropinirole? Your GP needs to help you do this by prescribing a low dose opioid ( codeine, tramadol or oxycodone) to settle the withdrawals at each dose reduction and to prescribe pregabalin or gabapentin to start 4 weeks before your last dose of Ropinirole.
Please do report your doctor to the RCGP and state that your GP thinks serum ferritin of 50ug/L is normal, when NHS and NICE state anything below 75ųg needs treatment.
Also report your augmentation symptoms via the Yellow Card reporting system. Unless we ALL do this, the UK medical Profession will keep prescribing these drugs and refuse to accept they all cause RLS to worsen.
I know, ever time I suggested otherwise she shut me down and reiterated it was normal.
She did suggest coming off Rop but I’ve been on gabepentin a few years ago and it made me feel terrible.
I’ve asked to be referred but she was very reluctant to do this but has done so.
I would like to take it further but as others may of experienced the GPs run rings around us.
It’s so debilitating.
Thank you for your help.
Next time, write notes and take a family member or friend with you. The fact your GP is so lacking in knowledge and so dismissive is NOT acceptable.If you can change GP surgery or GP, please do so.
This was over the phone!!!
🙏 thank you
Sigh. Still no excuse for the ignorance, lack of knowledge and negligence.
Same here. Ferritin on 48 and normal. I have bought some iron tablets and supplementing. Also on 100 mg Pergabalin. I was on 200 mg but had a few falls as I get very dizzy. Gap's just have no idea!!!
I have had a referral to Dr Oliver Bandmann at Sheffield hospital, because I was exaggerating. You need to sound super desperate. I had to wait about 6 months to see him. Keep nagging your GP! You will definitely get a referral to a neurologist! 
Given up with GPs!
Thank You for Sharing Knowledge and Experiences
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