just seen results of my iron studies, not good to say the least! My GP held her hands up and admitted she knew next to nothing about RLS and was receptive to the literature I printed off for her. She is not happy to start a tapering regime until she gets advice from a neurologist and has referred me to The Walton Centre but ordered bloods in the meantime. Results as follows
Iron 3.3
Transferrin 3.78
TIBC 95
%saturation 3
Ferritin 6
Hb 101
Any advice on what the best treatment would be for me to suggest to GP on my next appt?
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Bluejan
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wow your numbers are low. If you can persuade them to give you an iron infusion that would be brilliant.
If not it’s oral iron which is desperately slow but effective in some. Someone more knowledgeable will give you detailed advice but probably you want ferrous fumarate or equivalent. Some say take daily some say every second day.
I’ll let the guys give you the proper information but didn’t want to leave you unanswered.
It’s good that your gp admits to not knowing about RLS. It means you can educate her! Check out the mayo clinic updated guidelines on RLS. Also NICE CKS RLS guidelines which are UK specific. Plus there is a wealth of information on the RLS-UK website.
Thanks for the quick reply, yeah my GP was open about the fact she knew nothing about treatment for RLS and was happy to accept the info I downloaded from RLS website, whether she read it or not is anyone’s guess. She wouldn’t start a tapering regime so I’ve started it myself and am currently on 2.5mg and ready to drop to 2.25 at the end of this week, wish me luck!!
You need an iron infusion. Like yesterday!Those figures should set off alarm bells.
Ask your GP to look at RLS-UK - Useful Resources. There is a withdrawal schedule to get you off Ropinirole and an Iron therapy page setting out what levels are needed for RLS.
As you are so, so iron deficient, start supplements now.
Take ferrous bisglycinate as set out on RLS-UK website.
Be wary of the Walton Centre. They are way behind best treatment and latest research. Insist they get you an iron infusion and OFF Ropinirole and do NOT let them prescribe Pramipexole or Neupro patch as ALL dopamine agonists cause augmentation very quickly once your D1 receptors are up regulated on Ropinirole.
You don't have to wait for the appointment at the Walton Centre.
You could push to see Dr Chris Murphy in Salford. He does arrange iron infusions and will prescribe opioids to help you through Ropinirole withdrawal.
Thanks Jools, I’ll ask GP about a referral to Dr Murphy and if necessary I’ll pay for a private consultation. I think the wait for the Walton Centre is well over 12 months anyway. I’ve downloaded and printed off the regimes for iron therapy and tapering off Ropinirole so am armed and ready for when she contacts me about my results
Excellent. There are a few mentions of the Walton Centre on here and the doctors there seem to be very fond of dopamine agonists. They usually switch patients from one DA to another or mistakenly tell patients that Rotigitone is unlikely to cause augmentation. That's simply not true and prolongs patients' suffering.Dr Berkowski has done a webcast about it. If any doctor suggests Rotigitone- ask them to look at the webcast.
I have never seen results that low. You have anemia. As others have said you need an iron infusion.
In the meantime if you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Take it every other day as more is absorbed that way preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium (or magnesium rich foods), calcium (or calcium rich foods) or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion.
I would not go to the Walton Center! See Dr Murphy instead.
Your GP should refer you to a haemotologist immediately. In addition to RLS, and based on these results only, it looks as if you are also suffering from anemia.
I just started reading Andrew Spector's book, Navigating Life with RLS. While he is a proponent of IV infusions, he makes a point that contradicts some of the usual advice here. He says that until your ferritin reaches 50 mg/L, oral iron is much better absorbed, and so he rcommends starting with oral iron, then considering an infusion once ferritin increases to 50. Apparently once ferritin is above 50, the body starts reducing how much oral iron it absorbs. People with normal blood iron levels who aren't getting enough iron in the brain (I don't think there's any practical way to test this) will benefit from an infusion. But when blood iron levels are really low (like yours), oral iron will be better, at least in the short term.
I know this runs counter to most advice here, so make what you will of it. But I do think Spector is spot on on most things. In any event, it wouldn't hurt to start with oral iron and see what happens.
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Iron 
How reliably does NHS retest Blood iron levels after IV Iron?
Iron Infusion 
Accessing Iron Infusion
iron panel - almost normal?
