Hi All. I recently had bloods tested and the GP said “nothing amiss here all normal”. When I asked what my ferritin was she again said normal at 45. My memory seems to tell me this should be around 100+. Which of us is correct please? Had RLS for decades but now having an improvement in my ventricular impairment I’m eager to sort my RLs. As seems to be the ‘norm’ Uk GPs have no knowledge of how to help us and mine tried to persuade me to take ropinerol When I said “no thanks I’d rather suffer the rls” unless you can give me bupanorphine. His reply was rls medication is first line to use dopamine related meds. This is despite my having given him the Mayo info on rls. Thinking to maybe start ferrous byglicinate chelate and give up on seeking GP help for rls. I had a telephone consultation with Dr Walker last year but our Health Trust here will not countenance opiate prescriptions despite where the request comes from. Thanks and. I hope, you all have a lovely festive season.
ferritin levels: Hi All. I recently had... - Restless Legs Syn...
ferritin levels
Your GP is being stubborn and unwilling to learn.The NICE cks guidance actually DOES suggest pregabalin or gabapentin as first line treatment ALONGSIDE dopamine agonists. SEE ABOVE. He needs to read it! And it also requires serum ferritin to be above 75ųg, so again, he needs to read the UK guidance.
RLS-UK website has the detailed information on Iron therapy under Useful Resources.
Here are the links. I suggest you write him a letter expressing your concern about his lack of up to date knowledge on treatment and copy in The Royal College of GPs.
However, he is correct in not allowing opioids as first line treatment. Gabapentinoids are first line. Opioids are then used if gabapentinoids fail.
You should start iron therapy now. Either ferrous bisglycinate every other day as prr RLS-UK website OR a private iron infusion costing around £800 from the iron clinic in London or Manchester.
One day, doctors WILL have to learn about this common, serious disease.
cks.nice.org.uk/topics/rest...
Jools, I could not find anything in RLS-UK website about iron dosing. This clip is from Mayo Algorithm: A common oral iron regimen is 325 mg of ferrous sulfate (65 mg elemental iron) in combination with 100 to 200 mg of vitamin C with each dose to enhance absorption once daily or once every second day. More frequent administration of iron may reduce absorption. There are data from nonhuman primate studies that iron is taken up by the brain from the blood at higher rates at night than in the morning.24 Because the treatment object is to increase specifically brain iron concentrations, the use of oral iron at night may be more advantageous.
It's under Useful Resources. There's a printable page on Iron therapy.RLS-UK has followed UK practice on iron supplementation. So that recommends taking iron pills in the morning when hepcidin levels are lowest.
And the Mayo recommends taking at night.
A Contradiction indeed. I’ll need to take mine at night as I take my asprin in the morning. Experimentation is the name of the game I’m thinking, but will start in the evening a couple of hours Before bed. Thank you all for taking the time to respond to me. Maggie
Thanxxxx!
You are correct. Your ferritin should be at least 100 and some think it should be 200 or more.
Your ferritin is very low. I would ask for an iron infusion to quickly bring it up but your doctor probably won't prescribe it. You can also get one privately at The Iron Clinic in Harley Street. but it costs around £800.
Meanwhile or if you don't get an iron infusion then you need to take iron. 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. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible.
As Joolsg said gabapentin or pregabalin are first line treatments for RLS. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [Since you are over 65 if you are susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. 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 to 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin).
Hi Sue. Thanks for the confirmation. I do take 75mg dispersible Asprin each morning so am wondering if this is nowadays considered a blood thinner? I have been allowed to discontinue the clopidegrel blood thinner hence my thoughts on using iron bisglycinate. I’m thinking to have a go with it between supper time (around6-7) but before bed at around midnight if I’m lucky. Would welcome your thoughts. Thanks for your input too Joolsg and I totally agree with Madlegs comments …. Oh so apt…… don’t forget the economics and ‘help’ to the increase in the Government coffers of our pension payments.
Since you take the aspirin in the morning and the iron at night, the effect should be minimal.
Thanks Sue. I’m off to get in the morning and will update you in a couple of months. X
Us "ould "ones are utterly dispensable to many of the so called caring profession.
Do they really care?
Is it a question of getting the doddery old persistent complainer out the door in the allotted 6 minutes?
"You dare to pretend that you know more about medicine in your few moments of scrolling the internet, than my stupendous knowledge gained over almost 10 years in college and hospitals.
I know all there is to know about sleep issues, having spent approximately 10 minutes of lecture time on it.
And then you gabble on to me about American research that hasn't any relationship to our system over here.
Go on away with yourself, while I check out whether the Maldives or Mauritius are the better option for this weekend's getaway?"
Sound plausible?
Maybe I'm being too hard?
Not understanding??
Comments welcomed!😎💚🍀
Great thoughts and oh so true.
Again my laugh for the day - actually laughs !!!🤣🤣🤣
Hi Madlegs I'm in Ireland too so understand your comments about 6 minutes etc. Since they gave me the GP card when I reached 65 I feel I am not as welcome. My old GP retired a few years ago, he would spend ages chatting. He also said he had no problem with the GP cards that he got a reasonable fee. No pressure to leave. I was down with my husband to see his replacement recently, and he stood up reached for my husband's coat and ushered us out. Maybe he was having a bad day and under pressure. He is usually fine. Afterwards my husband said I had not managed to raised all that I had intended to there. (to give Dr his due, he has mentioned before to pick two subjects to raise and stick to them, make another appointment) I will be seeing him tomorrow for my RLS and feel much better prepared reading the great posts, particularly that last one by SueJohnson and many others but can't remember their names, sorry.
Good for you!
I have no bother making appointments continuously with the GP practice.
It is a panel system here, so I don't always get the same doctor- if I'm in a hurry.
If I'm prepared to wait 3 weeks, then I get to choose.
I have finally settled on a young and sympathetic lad who listens and is interested in taking me seriously., so I always ask for him by name.
They make good money out of the GP card, so don't be shy about using it.
You paid enough over the 40 years of PAYE/Prsi to deserve a decent level of service.
Keep strong-- both of ye!💚☘️☘️🍀
Tulip, the ferrous bisglycinate is a great idea! That’s all I use essentially. I take it every night on an empty stomach about two hours before bed. It relieves the RLS for one night so I must repeat every night. There are dozens on here that follow this protocol and get “that” night relief from the first pill. There are enough of us now that I have started a club. Here are some of the other members:
healthunlocked.com/rlsuk/po...
Here’s one of the newer members. Tulip, it’s REALLY important to read her story. Getting an infusion and maintaining her ferritin at over 200 did nothing for her RLS. RLS has very little to do with bodily ferritin and everything to do with something called serum iron, which is just this free floating, unbound iron in our blood that plummets at night and we get RLS. PLEASE read. healthunlocked.com/rlsuk/po...
Actually, here is the newest member. Taking the ferrous bisglycinate in the morning and raising her ferritin from 77 to 112 did nothing for her RLS. When she started taking the iron at night her RLS essentially disappeared. Here she is: healthunlocked.com/rlsuk/po...
Much luck! Please report back if you get the chance.
My kidney specialist has just put me on half an opiate at night for my legs a, Palexia slow release, long with Sifrol and cannabis oil. 76 and one year on dialysis , at this stage an addiction means nothing.
Iron supplements and ferritin levels
Thank you - ferritin levels. 😀
Ferritin levels
Advice Needed re Serum Ferritin Levels
Confused about ferritin levels
