please could you advise!
My Ferritin level is 50, GP has advised that this is normal and been flippant in her communication.
I am right in thinking this level is too low ?
How would I approach my GP with this information?
Suffered since I was 6 now 48!
Currently on Ropinirole but experiencing augmentation!
Thank you in advance.
Welcome to the forum. You will find lots of help, support and understanding here.
It would be best if you can get an iron infusion as that will quickly raise your ferritin and raising your ferritin will help with your augmentation.
If you can't get an iron infusion then 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 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. 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 tumeric 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 or after 8 weeks if you have an iron infusion
On your augmentation, first off check if you are on the slow release ropinirole . The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.
To come off ropinirole , reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)]
Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
You are right. What is normal for others is not normal for those of us with RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms.
Can you complete your profile and bio so we know where you are and ALL your medications?If you're in the UK, your GP cannot ignore NHS and NICE guidance, both of which recommend iron treatment if your serum ferritin is below 75ųg/L.
You can get a private iron infusion from the Iron Clinic in Harley Street, London for around £800. A few NHS hospitals are now aware of the benefits of iron infusions, so if you live near St George's in Tooting, The Royal Cornwall in Truro, Salford or Sheffield, you might get an infusion on the NHS.
If your GP doesn't follow NHS and NICE recommendations on ferritin levels or augmentation, she is in breach of duty and you could take legal action. I don't like to recommend that, but knowledge and treatment of RLS is so poor in the UK that only legal action and loss of money will force the medical profession to learn the basics.
Your GP should arrange iron supplements or an infusion. And should advise you to reduce Ropinirole.
Once Augmentation hits, raising serum ferritin above 100ųg, preferably 200ųg/L can help reduce augmentation symptoms and make withdrawal a little easier.
Discuss getting off Ropinirole and ask for your GP to assist. She will need to monitor you carefully and prescribe a low dose opioid like codeine, hydrocodone, tramadol or oxycodone to help settle the increased symptoms at each dose reduction.
Switch to normal release Ropinirole and Reduce by 0.25mg every 2 weeks.
Start pregabalin or gabapentin around 4 weeks before you drop the last dose.
Most GPs have not been taught anything about RLS, so refer your GP to the RLS-UK website which contains up to date information on dopamine agonists and replacement medications.
I’m in the uk!
It took me 5 weeks to get a phone GP appointment!!
Do you think I should try to get an iron infusion or wait 3 months?
You can start taking ferrous bisglycinate every OTHER night for now and see how that goes. DicCarlson had a great response to oral iron.If you have the money, the fastest, most effective way to raise serum ferritin is by iron infusion. You send your blood results to the Iron Clinic & they will advise further.
But whatever you decide, get off the Ropinirole.
And I'm very much aware the NHS is falling apart. I'm sorry you're having to navigate augmentation while GP services are so dire.
Thank you.
Interesting about your advice regarding GP, I’ll mention that!
She didn’t even mention my results.
Refer her to NHS and NICE guidance. She has a duty to look at those before treating RLS. The RCGPs refused RLS-UK campaign to teach RLS. They said GPs would know how to treat it and would refer to NHS and NICE guidance. We know that's not true, but tell your GP that she has to follow guidance AND if she doesn't, you have a legal case for breach of duty/negligence.
Great advice and info from Sue and Joolsg above. "GP has advised that this is normal and been flippant in her communication." Imagine that! You are the mirror image of my RLS. I had "growing pains" as a child and they diagnosed me with iron deficient anemia then. Fast forward 50 years or so and I had severe RLS - docs pounded the table "This is the only solution for you." referring to Ropinirole. Thanks to this forum I resisted. Ferritin was 49. Iron supplements literally stopped RLS in it's tracks - went to 105 in 3 months.
thank you for your reply and support.
I am on Ropinirole 2mg, experiencing augmentation and generally feeling miserable about any time after 6pm 🥴
Tried everything over the years but nothing brings relief for long.
I am completely free of RLS 24/7. But first I had to get off Ropinirole.Until you stop Ropinirole, nothing will help.
Hi Standing 123.
Yes I did experience augmentation when using Ropinirole.
I've been suffering RLS for around 30 years. When I first consulted my GP about the problem he knew little or nothing about it. Eventually it was identified as RLS but unfortunately the medics knew hardly anything about treatment. Eventually, I did some research and discovered that Ropinirole was the front line treatment. I brought this to the notice of my GP who did some research himself and issued a prescription. It worked great for a few years but then RLS came back and got progressively worse. Knowing nothing about augmentation, I increased the dose, which of course only worsened things more. Eventually, this blessed forum advised me about augmentation.
Coming off Ropinirole was tough but eventually I got through it. Then I went on patches, which Sue Johnson rightly advised me would also augment which it did after just 2 months. The withdrawal was easier this time as I was expecting it.
Again the forum came to my rescue by indicating that Gabapentin was now a front line treatment. Unfortunately, in ROI, GPs are not licensed to prescribe until such prescription is first approved by a consultant.
I had a two month wait to see the consultant who readily issued the prescription. I must say that was a tough 2 months. Bad RLS and little or no sleep. However, things have improved dramatically since then. Following a period of trail and error regarding the dose I am now on 900 mg Gabapentin in two separate doses which is working well. RLS has all but disappeared and my sleep patterns are also greatly improved.
Hope this is of some help Standing 123 and the best of luck in dealing with this horrible ailment. Again my humble thanks to this forum for being so incredible helpful. I'm sure some of the other advisors will be more than willing offer you much better informed advice than me.
Best wishes.
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