Ok so I have been looking back on my ferrin levels and this is over the years, it's actually gone up a bit over the years recently to 197 but within a month dropped down to 140 but this is what is was when my rls started back in 2019So I've always been under 100 since 2014 gone up since they put me on ropinirole not sure if that's anything to do with it. But are this levels normal?
I'm so peed off 😩 cannot get any information from my doctors and I assume the neurogist saw these amounts when I was referred to him years ago.
Do I take 200mg iron tablets. ?
11 November 2024. 197 ug/L
7 October 2021. 69 ug/L
4 November 2019. 18 ug/L
24 June 2014. 43 ug/L
Written by
Mikki01
To view profiles and participate in discussions please or .
Iron treatment for RLS has been known about since 1953. 70 years ago!!@And UK neurologists have completely lost that knowledge.
If your serum ferritin was 18ųg in 2019- an iron infusion would probably have resolved your RLS.
I really think you should consider legal act against the neurologist at Preston Hospital who has been treating you.
There is a law firm in Northern England that wants to bring a legal action on a no win/ no fee basis against a UK doctor who has failed to follow the UK guidelines. (THEY DID REQUIRE SERUM FERRITIN TO BE ABOVE 75 IN 2019). Particularly re advice on augmentation. Did this doctor warn you about augmentation and the signs to look out for?
And do report augmentation via Yellow Card Scheme.
I am gathering all my emails to him and all the fob off letters I got back. In 2019 ish is when I started with the issues. They put me on ropinirole and gradually increased it. I now have muscle spams also which I am convinced is all linked. When I was diagnosed with rls, I only had symptoms at night. They obviously got worse as I went for help, but I didn't have them in the day. So if he had given me an iron infusion back then, it could have sorted me out. So placing me on these pills has made my condition worse, and I've had no or little communication with him. I will do my research on what to do re a case but also in the meantime I've got down to 5 x 2.5 a day from 8,0.25 I'm having to go to the gym at tea time then pop pills before I have to sit down. I have another doctors appointment next week of which I will be asking to be referred to Dr Murphy or someone with rls insight at least. My levels went up to 197 in Nov but dropped this week to 140 so I will be going for regular blood tests. I assume it's too late for an iron infusion as 140 levels? Wish I knew all this years ago and the level of severity it would get to. I've read twice a week is considered server, how about everyday 😳 unless u have it or had it no one knows this torture. People think oh rls it's a bit of a oh I need to move my legs, or I get oh yeah I get that, as if it's nothing and a normal thing. I would shave my hair off if I was told it would cure me.
This is my other iorn results this month
so my transferrin is 2.18 gl was 2.04gl last month normal range show as 2.0 to 3.6gl
Serum 20 umol range 10 to 30
Serum binding 50. Range 37 to 77
Iorn saturation 40. Range 25 to 40
They said all normal
But my ferrin has been low for years until recently.
Don't know what to do what medication to ask for but that's where this new consultant would hopefully come in
The muscle spasms are CLASSIC augmentation symptoms!@!If this idiot neurologist is prescribing baclofen instead of realising this is augmentation- he needs to stop practising or go back to school.
I had terrible spasms on Ropinirole.
Reduce slowly using the withdrawal schedule we have given you. It's on the RLS-UK website.
Slowly reduce baclofen as you don't have 'spasms' - you have severe drug-induced worsening.
As Dr Andy Spector says- there's no RLS as severe as dopamine agonist induced augmentation.
Keep reducing Ropinirole slowly.
And sadly, once augmentation has happened on these poisonous drugs, iron infusions AND gabapentinoids often don't work as our dopamine receptors have been permanently damaged.
But I guarantee that once you've been through withdrawal- you will find the right treatment.
Just found out my vit d is 45 range of 50 to 150 never been told to take anything g before for this and looking back seems to have always been low. What dose would you recommend, and should I get prescription ones.
The problem with being referred is there will be a long waiting period before you can see him. If you can afford it I suggest you get a private appointment.
Since your ferritin goes up and down you might want to keep taking iron.
Take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day, 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, calcium 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 or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
In 2019 your iron levels were very low at 18 µg/L and yes this could have been connected with the RLS starting. It's not guaranteed that an infusion or other supplementation would have resolved it but it would have been the best and easiest thing to start with. It's not entirely clear from your post what your ropinirole history is but it looks like you ended up on 8 x 0.25mg tablets ropinirole a day, and if so that is twice the normal maximum dose and you will be very likely to have augmentation where the drug makes the symptoms worse, and can cause then to spread to the daytime as well as other parts of the body.
If you are reducing your ropinirole then you may be aware that this can be very difficult for the body and can lead to withdrawal symptoms. The best way to avoid this is to go slowly and let your body adjust to the new dose each time you reduce. A suggested dopamine agonist withdrawal schedule is included in the one-page guide on this page. Everyone is different and some people find it easier than others.
If your ferritin remains high by which I mean at least a 100 and closer to 200 then you may find that your RLS improves eventually without other medication but be aware it can be a long process for the body to adjust to the reduction in drugs and your dopamine receptors to return to normal.
I know so upset yes I was on 8 0.25 a day I've got it down to 5 0.25 what can I take with it when I'm getting to a lower dose to help with the rls as I cannot bare to go without anything 😫
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Is elevated Ferritin related to Restless Legs or something else?
RLS and Iron Levels
Are my iron levels ok?
Advice needed on iron levels (plus an update on Targinact)
