I've had my long-awaited GP appointment and took along some info about ferratin levels. She said I was tested a few years ago and all was fine, but I'm not sure she understands the test that I was talking about, the test I've read about on this forum. Anyway, she ruled out a test, said it was unnecessary. She gave me a prescription for Ropinerol because I think augmentation may be beginning with Dihydrocodeine. I haven't started it yet.
Meanwhile, on advice received here, I've been taking magnesium citrate along with B complex, for five weeks. I notice that I'm taking my Diyhdrocodeine about 90 minutes later than usual, and just under 30 mg less per night.
I don't know what to do about the ferratin testing, I admit to not really understanding it.
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lorrinet
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See a different GP. You need to know current ferritin levels and for RLS they need to be above 75. Most GPs are ignorant of this so you need to take in relevant info from rls-org.uk and demand new test. I've not heard of augmentation on dihydrocodeine before but ropinirole does cause augmentation. If you get ferritin levels up you may not need meds. That alone should persuade GP to order new blood test, saves cost.
Agree- it is crucial that you follow this up and not be fobbed off.
Iwas in hospital a few years ago and was released after major surgery. Ferritin levels were over 3000 (normal about 100) natural enough after many pints of blood. The thing is that noone bothered to follow up. When I demanded to have ferritin tested by my gp based on rls advice here, it came back as 1100+ . That rattled a few cages.😂
So , my point is, it's your body and your health , and unless you take charge- no one else will be bothered.
Thanks everyone. Does this test have a specific name, something my GP will understand as being different from the normal test? Because she told me that they always test ferratin levels when testing blood, and mine was normal. I admit to being a little confused. She is the most knowledgeable GP in the practice - because I took her in a load of info around 15 years ago, which she read (previously she'd claimed that it couldn't be RLS because, she said (as did another GP) that it only occurs in the legs. She accepts now that I have full-body). She tells me she has other patients with it too. Perhaps I should get a test done privately.
I am going through the exact same thing with my doctors. I had every blood test under the sun last week, ordered by my doctor after my asking to get my ferritin level tested. On asking for the result they said "normal" I said "what is my exact ferritin level"? They couldn't find it! So I'm going back next week to get yet another test. What a waste of resources! If your doctor insists you don't need the test, ask the receptionist if any of the doctors at your surgery have an understanding of RLS? Plus, as Joolsg said, go in armed with information and stand your ground.
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Lorrinet, i agree with the others on finding out what your ferritin level number is. Ok, your ferritin is how our body stores iron. For RLSers, it needs to read 50-70 altho lately the RLS experts are recommending higher as in 100 or over. So, most doctors will just say to you its normal or in the normal range. Now, if your number is low, you can take iron supplements to help get your number up. Altho i must stress this doesnt help everyone who gets to a good level. IF you started a iron supplement without knowing the number it could be dangerous as Madlegs has said what his is, he dare not take any extra iron. I hope that makes sense
As everyone knows we would do ANYTHING to get rid of RLS. I searched and searched the internet - had all the tests done - nothing - you're normal - DON'T DO ANYTHING! Then I found this on Johns Hopkins Neurology website - just this one sentence "Since the 1950s, it has been known that iron therapy, even without the presence of anemia has benefits for RLS symptoms." I originally found some relief taking Black Strap Molasses (contains iron) - then found the ferrous bisglycinate chelate and never looked back. My original level was 49 with a 25% saturation level. hopkinsmedicine.org/neurolo...
I believe there are a number of different tests for iron levels but the serum ferritin is the important one for us. It might help if you google and have a full knowledge of all the possible tests so that you can meet her arguments full on.
A test 'a few years ago' is no use to you. As all the others have said, iron is one of the biggest hopes for RLS sufferers.
I get so fed up with GP surgeries telling people they are 'normal'. Normal is a huge range in any event and for us is so different from others. The surgery gets a figure - why on earth can't they give the figure, along with what they understand is the normal range. Why are they so cagey with the actual figure? It drives me crazy.
Dihydrocodeine - is this not a opioid? I did not know that it was associated with augmentation. I would think carefully about moving to ropinerole. It can be great but almost always causes augmentation in the end. If you do take it make sure to keep to the lowest effective dose for as long as possible - use something else to help if you start to get breakthrough symptoms and if you notice it becoming significantly less effective it may be better - even if counter-intuitive - to take a break from it for a while rather than increasing the dose.
Someone else on here also said that Dihydrocodeine is not usually associated with augmentation and if that's the case, something else must have happened. I know that RLS worsens with age, perhaps it's as simple as that. I also know from experience that Dihydrocodeine from Bristol Laborities is not quite as effective as from other makers, and most pharmacies for some reason only stock Bristol Labs now.
Since taking Magnesium Citrate and B Complex for five weeks or so I've cut Dihydrocodeine by 30mg per evening, so am holding off the Ropinerole for now. I will continue to try to get a blood test.
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