Hello. My name is William Henry and I have posted many times on this Forum. I have had RLS for many years and it has been very bad recently
I have decided to confront my GP about talking to me about RLS My GP has continually refused to discuss my RLS with me
What level does my Ferritin Levels need to be to combat RLS?
I had a recent full blood test and to be totally correct what section of my Blood Test do I need to read to compare my reading with the Ferritin Levels suggested to combat RLS
Thank you.
Kind regards,
William G Henry
Written by
williamghenry
To view profiles and participate in discussions please or .
Restless Legs Syndrome Foundation has a publication RLS Medical Bulletin: A Publication for Healthcare Providers. You would have to join for $40 but it is well worth it. It has a lot of information on its site at rls.org and you get a monthly magazine. They also have a publication Understanding the Relationship Between Iron & RLS.
Thank you, Sue. I read the abstract because you posted the link yesterday, but saw no mention of ferretin. I guess I need to download the entire issue?
I probably confused you by mentioning the magazine.
Go out to rls.org and click on member portal and you will see publications. Click on that and you will see Understanding the Relationship Between Iron & RLS.
For the other one click on Understanding RLS, then on For Healthcare providers and you will see RLS Medical Bulletin.
Thank you so much for taking the time and the trouble to write me such a kind and detailed reply! I just went to the site, and saw the links. I have my hands full right now dealing with other medical problems. but am grateful to be introduced to RLS.org, and its wealth of information. I will definitely join when I come up for air. Thanks again!
Hi Williamghenry,As previously advised, your GP should arrange morning, fasting, full iron panel blood tests. Your serum iron should be above 60ųg and your serum ferritin above 100ųg, preferably 200ųg/L.
Join RLS-UK and look at their website. Ask your GP to look at the website too. There is a printable page on Iron Therapy under 'useful resources'.
You said you were on pregabalin twice a day. You only need to take it in one dose at night. Average dose is around 150-200mg.
And your GP should review ALL other meds and safely replace meds that worsen RLS. They are also listed on RLS-UK website.
And remember to do your exercise before noon as aerobic exercise can worsen RLS in the afternoon & evening.
I would be vary careful using the RLS-UK website. It looks lovely, and tells people what they want to hear, but it also passes off American articles as official NHS Guidance, which they clearly aren't. It's a Quack website. Be a slave to it if you like, but just be careful.
The website is very clear about where its guidance is from, predominantly the Mayo Algorithm and AASM and the articles are in the public domain, respected scientific and medical journals and peer reviewed. However the advice is very similar to the UK NICE guidance which you will see if you compare the information at the following links:
You will see that the Mayo Algorithm corresponds quite closely with the UK NICE advice and the NHS advice, the latter of which is more general.
Overall UK and NHS practice lags behind international accepted best practice so there are some significant differences, particularly in the use of dopamine agonists as first line treatment. There is abundant data to show that many people will experience falling effectiveness, and rising dosages on these drugs leading to serious side effects in some case such as ICD but ultimately in 70% of cases resulting in a worsening of the sufferers RLS, eventually requiring a very difficult withdrawal from the drugs.
This is known as augmentation and many people on this site have experienced this and had to work through the withdrawal, fortunately many successfully and have been able to report improvements once off dopamine agonists
Not everyone responds to treatments such as iron therapy or gabapentinoids but both of these are less harmful in the long run to the patient so are sensible first choices. Low dose opiods such as buprenorphine are also effective and generally have fewer long term side effects than dopamine agonists
I would be grateful if you could explain your views above. Is there a specific advice you believe is wrong and do you have evidence to support that?
That is extremely offensive. If you have been through the NHS for treatment of severe RLS, you will quickly realise that UK GPS and NHS are years behind best treatment.As a result, patients are suffering terribly on dopamine agonists.
We know of hundreds of patients who have successfully sued UK GPs and neurologists for failure to advise of the VERY high rates of ICD.
Augmentation rates are also extremely high. If you have been prescribed a dopamine agonist by the 'NHS guidance' then I feel sorry for you. You will soon discover why RLS-UK has chosen to follow the latest, best research and treatment protocols from the USA.
You should read the research articles before coming out with such a knee jerk comment.
Iron infusions were first used successfully in 1953 by Norlander. 70 years ago they knew iron infusions could resolve RLS! YET the NHS refuses to give iron infusions.
And ask yourself why the NHS still has dopamine agonists as first line treatment?
Would any intelligent person agree to take a drug that is proven to make the disease itself 1000% worse??? Look up iatrogenic worsening. The research articles are clear. Dopamine agonists should be banned /relegated to end of life scenarios.
What is extremely offensive, Jooolsg, is your knee jerk reaction to my simple observation that when one is reading a self-regulated, unaccountable, medical resource, one needs to be careful. If you'd like to re-read my post, that was my only advice - be careful. I'm sure you, like RLS-UK would love everyone to fall at your feet and worship you and your abundant expertise, but I'm afraid you're going to be disappointed in my case. I repeat, for the benfit of everyone here - Be Careful! Take medical advice from a man in the street if you like, but Just. Be. Careful. if you do.
I will not reply further as you clearly have an agenda.RLS-UK makes it clear that they follow the latest research & treatments as set out in the Mayo Clinic Algorithm and the new AASM guidance, written by the world's top RLS experts. If you choose to follow outdated NHS guidance, that's your choice.
RLS-UK has had 2 top UK professors talking at the 2023 and 2024 AGMs. Professor Matthew Walker at Queen Sq made it clear that he prescribes iron infusions for RLS. The gold standard Cochrane research papers support this. This year Professor Toby Richards also talked about the benefits of iron infusions for RLS.
So I prefer to follow the science and research articles.
I only get serum iron levels when I have a full blood panel done. I had to ask specifically for ferritin last time. However, it doesn't sound like your doctor would be willing to request your ferritin levels being checked if your doctor is unwilling to speak with you about RLS at all. I would definitely get another GP if possible.One non-prescibed thing that actually did do something for my RLS was Black seed oil. I rubbed it on the soles of my feet and it really worked. Unfortunately it also made my dry eyes much worse so I had to stop. I bought capsules on Amazon so I broke the capsules to rub on the soles of my feet. They do cause some GI issues for some people when taken orally.
William, you need to tell us all the medications you are on. Btw, does standing and walking relieve your RLS or can you still feel it while you are walking?
I am on 40mg tablets of Simvastatin, Thyroxine 50 micrograms, Thyroxine 25 micrograms and Questran Light 4g/sachet Powder for Oral Suspension colestyramine.
When I do my walking and standing I still feel my RLS. When the weather is humid my RLS is much worse. I also experience what seems like pinpricks all over my body I sleep an average of 2 to 4 hours a night when my RLS is severe. I eat Gluten Free Bread, drink herbal teas and eat lots of fish products to help with my bowel moments Before my Bowel operation my RLS was not too bad. Since my Bowel operation my RLS is much worse and when the weather is reasonable I experience RLS two or three times a week. I have regular Webinars with Suffolk WellBeing which I find useful
Hypothyroidism is linked to RLS. Statins can also worsen RLS but you clearly need to discuss this with a specialist. There are a few people who have found ezetimibe causes less RLS than simvastatin, so discuss fully with your specialist.
You mention a bowel operation. Was that very recently? The anti emetic used with anaesthetic can worsen RLS and inflammation from the operation. Did they give you opioid pain killers after? Reducing opioids can also worsen RLS.
And any bowel malabsorption issues can affect iron absorption. An iv iron infusion can by pass these issues.
Can you ask for a referral to haematology? There are around 3 or 4 UK hospitals that are aware of the link between iron infusions and RLS..
William, you may have another condition in addition to RLS. My guess would be small fiber neuropathy - often seen in connection with hypothyroidism. Heat is also known to make neuropathy worse. There are some pretty definitive tests for this condition but not great treatments.
On the outside chance it provides relief I recommend buying a form of iron called ferrous bisglycinate. It’s more bioavailable than sulfate. Take 56mg (or there about) on an empty stomach about two hours before bed. You should notice an improvement in symptoms in about 1.5 hours if you’re like many of us on here. Good luck!
William, when were you prescribed the Questran? Not my favorite way to lower cholesterol. It can interfere with your thyroid medication thus you could be hypo right now and triggering neuropathy symptoms and RLS. Questran also interferes with metabolism of vitamin d. Vitamin d lowers something in your body called hepcidin. Hepcidin is a hormone in our body that lowers serum iron - that’s not good in terms of RLS. High hepcidin and low serum iron (which is not the same as ferritin) will make your RLS go crazy. Questran also lowers B12. Low B12 means worsened neuropathy symptoms.
PLUS, Questran is constipating and used for post-gallbladder surgery diarrhea. Never heard it prescribed for anything but this actually?
I think you’re clearly pre-disposed to RLS and possibly neuropathy and that these conditions were worsened by surgery and concomitant use of Questran.
With your doctor’s permission please take the statin and thyroid medication in the morning.
I know doctors are loathe to prescribe it but sometimes a tiny dose of T3 (I learned this on here) will help not only RLS but may help neuropathy as well. See below:
Time your medicines so that you take your thyroid medicine at least 4 hours away from any medicines that contain aluminum, calcium, iron, magnesium, simethicone, or sucralfate even in a multivitamin.
Statins make RLS worse for most. Nexlizet (Nustendi) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) reduces cholesterol although it doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
If you take gabapentin or pregabalin you should be closely monitored as it can raise the bad LDL and lower the good HDL.
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.
Ferritin levels
Ferritin levels?? 
Serum ferritin level
Ferritin levels
