hi, I’ve been trying to understand what RLS is and what treatments to have.
The neurologist tells me I have RLS, my symptoms are tingling sensation, sometime pins and needles in both feet and calves. I have it all day, everyday. I notice it when resting and don’t when standing and walking.
My B12 was low and after six loading doses and another injection 3 months later he says it can’t be related to that even though I have pernicious anemia.
I’m now on iron supplements for a month. I’m worried the next time I see him, he will prescribe medication. He has mentioned this before and talked about compulsive disorder. Does this mean he will prescribe the dopamine medication? Do I refuse that?
Many thanks!
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Rosecup
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Welcome: it would be helpful if you could complete your profile to show your country (this is a UK based forum but we welcome members from all over the world) , age and sex, as all these can be useful in giving advice.
Firstly, you say that you have symptoms all the time: do you actually have RLS? See these diagnostic criteria:
Secondly, in the light of your anaemia diagnosis and iron supplementation presumably you had a full iron panel test: what were the results? Serum ferritin and transferrin saturation (TSAT) numbers are key: you need the actual numbers as there's a very wide range of ferritin numbers that a doctor will call 'normal' and most don't know that RLS sufferers need higher levels. We benefit from ferritin levels over 100, preferably 200 or higher.
Thirdly, what form of iron supplementation are you taking, how much and when?
Fourth... well, there are other questions about what other medications and over the counter supplements etc you are taking as many can trigger RLS - if that's what you have...
So please review the diagnostic criteria and come back after comparing, advise on your iron results and supplementation, and list what other meds you are taking. You will then get advice here.
And finally, as you've gathered, don't let your doctor just put you on dopamine agonists - pramipexole, ropinirole or rotigotine. If you have RLS they'll help for a while but then almost certainly make things worse.
Thank you for your reply. I’ve updated my profile, I’m in the UK.
I don’t think it’s RLS as I don’t have any urges to move my legs, just the tingling sensation I sometimes get cramp but that’s not often. However the neurologist thinks I do.
I only have the results of Ferritin level of 53ng/ml, I don’t think I’ve had the other test done.
I’m on ferrous sulphate 200mg twice a day for a month and I take levothyroxine 150mg once a day, that’s it.
Thyroid issues and RLS are sometimes linked but this can be because of the side effects of the medication.
The following is for information only, to be discussed with your doctor:
Feeling restless, trouble sitting still and muscle cramps are among the common side effects of levothyroxine, which according to the NHS "usually happen because the dose you're taking is more than you need. These side effects usually go away after you go on to a lower dose of levothyroxine or stop treatment."
As I say, do NOT just reduce or stop your dose - discuss with your doctor!
As to your ferritin level: this is low for an RLS sufferer, but otherwise within the normal range.
Show the diagnostic criteria to your doctor. If you don't have the urge to move your legs you don't have Restless Legs and he needs to investigate further. If he refuses find another doctor.
I wouldn't worry about not having your TSAT number since you have anemia it will be fine,
On the iron, taking it twice a day is a waste. When you take iron, hepcidin is released which prevents iron from being fully absorbed for 24 hours and in fact more iron is absorbed if you take it every other day.
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 be sure your iron supplements contain 65 mg of elemental iron. If you tell me what you are taking, I can tell you if it has at least 65 mg .
Take your iron 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 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. Since 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.
For your next test ask for a full iron panel. Stop taking any iron supplements including in a multivitamin including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible.
Could be poor circulation , or Diabetes, both have those feelings in the feet , but I also have those feelings - the RLS normally starts around 10 mins after the sensation in the feet .
The urge to move is the most important diagnostic criteria. If you don't have the urge to move, it doesn't sound like RLS.Pins and needles in feet seems to happen to many thyroid patients. And it's a common symptom of B12 deficiency. Just because you've had B12 treatment, doesn't mean the nerve damage is resolved.
Also, RLS follows the dopamine cycle and is worse in the evening and at night, waking patients and causing sleep disruption and deprivation.
Like the others, I don't think you have RLS.
I think you need to see a B12 specialist for a second opinion. A Haematologist will be your best option.
Incidentally, dopamine agonists can be used for a short time, a week maximum, to diagnose RLS. If your symptoms improve, then you do have RLS. If there's no change, you don't have RLS. So if the neurologist prescribes either Ropinirole, Pramipexole or cardopa levodopa, take it for a week ONLY to see if it stops your pins and needles.
By and large, the reason that folks are posting here is that they can't get a decent night's sleep because they're woken up several times a night by jiggles in their legs, and have to relieve those feelings by getting up and walking around, and then repeat, repeat. repeat.
No I don’t have that. I do wake up, but that is usually due to hot flushes. My tingling doesn’t usually keep me awake, it’s always there but doesn’t prevent me from sleeping.
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