HelloI have suffered from severe RLS for about 40 years. At the moment I am trying to control it using magnesium salt foot soaks and magnesium oil spray
My question is what should my ferritin and my saturation levels be ? I requested a full blood test recently and before joining this forum I never questioned the fact that I have been told that my results are normal . According to this recent test -
My serum folate level is 10.7 ug/l , serum transferrin 2.8 g/l , serum ferritin is 42ug/l, and transf saturation is 21%
I am due to see my GP in the next week or so - can anyone out there help me by advising what levels of the above I should have?
Thankyou in advance
Kmc12
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kmc12
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Your transferrin saturation is fine. Your ferritin is low. It should be over 100. Take 325 mg of ferrous sulfate or 25 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. 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. Ferrous sulfate for most people does not cause constipation but iron bisglycinate is much less likely to. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take you iron at night. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. 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.
I am soooo glad that I posted on here! You are both so knowledgeable and extremely helpful. Wish some Drs would accept the fact that if you are unfortunate enough to suffer from RLS you will read anything and everything about the condition - and try most things too !
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, applying a topical magnesium lotion or spray, magnesium salts soak (as you are already doing), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
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.
I notice a month ago you asked about gabapentin. Are you still taking it?
Yes I still take 300 mg of Gabapentin about 2hrs before bed. I have been on higher doses but my GP felt that the side effects from the titration which I mentioned earlier would be enough to deal with for a while. I am going to ask her can I increase my Gabapentin gradually to 600mg x2 in the evening?
I also take Mirtazapine for sleep - been taking that for 4 years or more and have never noticed any effect on my RLS but the opioids I was taking were holding that at bay so I am not sure. I need some guaranteed sleep to get away from my pain for a while
That one makes RLS worse in most people. No wonder you are having problems. I would suggest ambien or lunesta. Both are great for sleep (I take ambien). Lunesta is probably better because you can take it long term whereas ambien is supposed to be used for short term or intermittent use. On the gabapentin ask for 100 mg capsules and increase by 100 mg every couple of days until you find the dose that works for you. 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. If you take magnesium take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of it and if you take calcium don't take it within 2 hours.
I have just had a text from a GP at my surgery saying that as my blood results are normal he sees no need for iron therapy.
I am going to make an appt with my own GP hopefully within the next 2 weeks. Can you help me with the units being used - what does g/L translate to and what should my level be ? 100g / L &. - what% is this as I am very confused - the units are different for every article I have read today☹️ Thanks in advance
Doctors will say your results are normal but what is normal and OK for others is not normal nor OK for those of us with RLS. And your ferritin is definitely not OK. Transferrin saturation percent measures the amount of iron bound to transferrin, which increases as the body's iron stores increase. There doesn't that make your understanding better 😀 . Too low a percent - under 20% would definitely mean you need an iron infusion. Too high a percent and you shouldn't be taking iron as you may have hemochromatosis which means you have too much iron in your body. . ug/L means micrograms per Liter and is what ferritin is measured in and it should be over 100. ug/L is the same thing as mcg/L or mg/L.
Thanks Sue - I was getting really confused. Am a bit annoyed at that text as I have never seen that Doctor and clearly hasn’t had time to read my notes ( he made another unrelated comment which proves this to me )
Everything Sue Says!Also, 60% of RLS patients who have an IV iron infusion see dramatic improvement in RLS as it's caused by low brain iron. UK GPs and neurologists don't seem to realise this, because they're not taught about RLS and they don't follow the latest research. You could be RLS and med free.
Read the Mayo algorithm.
Hopefully you will be able to raise your levels by oral pills, but you could push for an infusion. Several UK hospitals will do them for RLS.
The new formulations are safe and do not have a high risk of death/allergic reactions ( although most GPs seem to think they do). You could ask for a referral to the local haematology department and show them the Mayo algorithm and the articles below.
These posts are so helpful and I will ask my GP for iron medication
Unfortunately I have been titrating off opioids for chronic pain and starting amitriptyline. I know that amitriptyline can exacerbate RLS. 50 mg isn’t doing much for my pain so I dont know what my next step will be. Magnesium soaks are good and really that , together with stretches is how I am managing it right now
You can buy ferrous bisglycinate( gentle iron) from any chemist or health shop.Amitriptyline sends RLS through the roof for over 90% of us. My neurologist prescribed it for me and I didn't sleep at all. All anti depressants worsen RLS.
Opioids at low dose are very effective for severe, refractory RLS but if you're titrating off, the main symptom will be severe RLS.
Sadly, that will continue for around 3 to 4 weeks after you stop the opioids.
If you've had RLS for 40 years, what meds have you been on to control it? Or was it intermittent?
Once off the opioids, what does your GP have in place for your chronic pain? Medical cannabis is now available in the UK and is excellent for pain.
In the past (early 200s) I was given Pramipexole which worked for a while until I experienced what I now know to have been augmentation. I can’t be alone in saying that a lot of medical professionals at that time had never heard of RLS so you were mainly left to try and manage it yourself. I did used to get periods with no problems and then it would come back with a vengeance. Spent many a sleepless night dousing my legs with hot/ cold water. A nightmare!
One good thing about opioids for the past 3 years I didn’t have 2 attack. I hadn’t realised that coming off them would bring on Rls so thanks again !
Are you still on Pramipexole? If so, it is highly likely to have caused drug induced worsening of RLS (augmentation) & the only solution is to get off it.
Many of us have been through augmentation and are now on low dose opioids.
What opioids are you taking and what dose?
Look at RLS-UK website under treatments and the dose and timing of opioid meds is set out.
They lose effectiveness when prescribed for chronic pain, but not when prescribed at low dose for RLS.
Your GP won't know anything about RLS sadly so you'll probably need to come back here for more info and research links to showyoit GP.
Opiods- Co codamol - strongest dose allowed, then Tramadol 400 mg daily , Buphrenorphine patches( 15mcg I think) together with 40mg Oramorph daily.
Due to the side effects (which really started when I was given buphrenorphine ) volcanic hot flashes/ itchy skin/ night sweats . I am now down to 5mg of oramorph an D.C. titrated up to 50 mg amitriptyline
I take 300 mg of Gabapentin which I don’t think is enough but my GP wanted me to wait until my morphine dose was lower. I have been aware that opioids were keeping my RLs at bay but having been through and going through hell with withdrawal symptoms I am very loathe to start opioids again. However I was taking high doses for pain so……
Amitriptyline is the one drug I suggest you stop taking asap.It sent my RLS into overdrive.
Tramadol is the only opioid that increases the severity of RLS, particularly if you have been on dopaminergic drugs beforehand, so reduce that next.
You're on Buprenorphine, oramorph, tramadol and co codamol so clearly you need to reduce your opioids.
Buprenorphine is used to get people off opioids but it's used in place of tramadol, co codamol and oramorph. Not at the same time.
You should definitely ask for a detailed med review with your GP and have an agreed withdrawal schedule to get you off tramadol, co codamol and oramorph. Remain on the Buprenorphine while you do that and then discuss switching to Buprenorphine pills at the average RLS dose. That may cover your RLS. The sweats, hot flashes and itching are common opioid side effects. They tend to settle after a month or two. Adding a small dose of cetirizine can help.
Withdrawal from opioids increases RLS so your GP should work with you to consider increasing Buprenorphine to cover the opioid withdrawal and RLS.
As for gabapentin, I suggest you also discuss fully. Gabapentin alone can help RLS or at small dose to counter opioid wakefulness.
If you decide to withdraw from ALL opioids, the RLS will increase and eventually settle after 5 or 6 weeks.
You could then increase gabapentin. But gabapentin has its own side effects!
So get your GP to discuss fully all your meds and a detailed withdrawal schedule and agree a plan as to whether you stay on Buprenorphine or switch to gabapentin.
I am only taking 5mg of Oramorph at the moment - sorry I didn’t make that clear
My side effects from Buprenorphine never did settle - it was and still can be horrendous! I didn’t experience any of the same issues with co codamol , codeine or tramadol.
I definitely want to increase my Gabapentin - a few years back I was taking 2700 mg for pain with little effect but as you say the side effects were awful - I lost count of the number of nasty falls which I had
I am going to the GP surgery first thing on Monday to make an appt with my preferred Dr - I always make notes before I go and your replies( and Sue’s) will form the basis of that
As Joolsg said Amitriptyline can make RLS worse. There are only 2 antidepressants that are safe for RLS. Trazodone and Wellbutrin (zyban). I would ask your doctor for one of them.
Thanks Sue but I am not taking amitriptyline for depression but for chronic pelvic pain . Not getting much relief so may have to try Duloxetine . Opioids were much better for my pain but the side effects over time were horrendous
That one's worse or at least it was for me. My RLS was completely under control when my doctor prescribed it for some muscle pain I was having. After the second day it sent my RLS through the roof. Worse than before it was under control.
Do you think increasing my Ferritin level would help ? I am also going to ask my GP to increase my Gabapentin but it depends on any interactions.
I am now titrated to 50 mg amitriptyline and the maximum dose for pain is 75mg - I feel like I have to try because my pain is so bad but it’s not looking hopeful
Also do you know if Duloxetine aggravates RLS ? I have also been taking Mirtazapine for sleep for years without any effect on my RLS but I was also taking opioids during that time as well
Improving one's ferritin helps 60% of people with RLS, so yes do try increasing it. And as I mentioned, yes it is well known that Duloxetine can make one's RLS worse as it did mine. And Mirtazapine is also well known for making RLS worse so the opioids were probably hiding that effect.
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