Hi.. can anyone tell me please if restless legs syndrome and hypothyroidism are related.?
I believe both are circadian... but no one in my GP practice can help me very much...apart from prescribing levothyroxine...(last 15 years or more) and iron tablets or codein for restless legs... (about same length of time but not too sure.....)which trouble me very severely.
I would appreciate any help or advice..
Yes....quite a few posts on here discussing restless legs
How much levothyroxine are you currently taking
Do you always get same brand of levothyroxine?
What vitamin supplements are you currently taking and when were vitamin levels last tested
Just testing TSH is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Do you have Hashimoto’s?
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Medichecks - JUST vitamin testing including folate - DIY finger prick test
medichecks.com/products/nut...
Medichecks often have special offers, if order on Thursdays
Thank you Soooo much...
I really didn't know all this although I had been researching re hypothyroidism... and got bit confused about the T3 and T4 levels..
But..I'm sure these things are all connected in our bodies plus inflammation comes into the mix as well..
It's late now..but I'll endeavour to answer fully tomorrow..
Thank you again..
Jan.
Hi...yes... sorry.. slight mistake..
I was meaning to ask health unlocked/restless legs as well..
I have taken notes of your long and informative reply to me..plus the links..
I'm ploughing through all of it..
I have been researching this for sooo many years it seems..
I do have blood tests from time to time basically for another (blood clotting problem) but as its usually a full blood count .. often thyroid levels are included..
Then I request to have the results printed out...
If I'm lucky I manage to get them.
I've been told thyroid is "normal".. and iron ferritin normal...but I don't have much faith in gps as more..
Codein and tonic water.. and decaffeinated coffee they tell me..
I honestly think the doctors don't understand restless legs and hypothyroidism... and that maybe an endocrinologist would be best but then I need a referral...etc..
It's not so simple these days.
I don't like to tell GPS their jobs but I've taken papers in to show them regarding the connection and circadian rhythm .
I also think.. lack of sleep is causing my blood pressure to be high and bp tablet s are calcium channel blockers which could cause restless legs..
Doctors need to treat the "whole person".
Thank you once again.
Jan
Rare for an endocrinologist to be remotely interested is vitamin levels, other than actual deficiencies
You are legally entitled to copies of your own blood test results and ranges
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Come back with new post once you get results
Thank you soooooo much once again...
You are so helpful..
I'm going to email gp and ask for those thyroid tests to be done..
I'll dig out my last blood test and let you know..
Thank you.
Jan
I used to get it when not optimally treated so maybe post your latest blood tests?
I had it for nearly 10yrs, eventually I got a Tens machine and stuck the pads to a couple of places on my leg. The current was a good distraction and helped stop the feeling and let me get to sleep.
My B12, ferritin, folate and Vit D was low or not optimal too.
Restless legs, cramp, muscle spasms, twitching, and benign fasciculations all seem to have a lot in common in terms of causes. This post I wrote might help :
healthunlocked.com/thyroidu...
The post I mention above has the most important suggestions for restless legs and cramp etc. But if those don't help, then consider the following suggestions too.
One thing I didn't mention in that post was vitamin D. Optimising that is good for muscle health and for reducing muscle pain, and so may be helpful with cramp, restless legs etc. It is necessary to test vitamin D before supplementing because dose varies according to how low levels actually are. See posts and replies by SeasideSusie on the subject of vitamin D supplementation.
healthunlocked.com/user/sea...
It is also possible that (rarely) low calcium might cause cramp and other muscle problems. It isn't a good idea to supplement calcium unless you have been tested and been found to be very low or deficient.
Note that Medichecks currently has 25% off all of their tests for a limited time :
healthunlocked.com/thyroidu...
Hi Humanbean 
Not forgetting Magnesium & K2 with Vitamin D - especially Magnesium for cramps.
Restless legs is awful - GP prescribed me roprinorole, never found out if it worked as went down the vitamin road, sorted & avoided various surgeries too...
Yes, my mother ended up on quinine for restless legs - I don't know if it worked for her or not, or whether it caused side-effects.
My own solution to cramp, restless legs etc was vitamins and minerals. Far more effective, as well as being more convenient, than having to get a prescription for something which has a good chance of not working. And if I do have problems I can usually fix it myself, which is helpful at 3am when my legs are keeping me awake.
I don't have the great nutritional/medical knowledge of many of the fine folks on here, but I can tell you I sure as heck have restless legs! I was myself wondering if it might more severe when I am having a flare, as I have been in flare and my legs have been kicking away all night.
I’d recommend Magnesium and in particular Magnesium Malate which is really good for muscular issues, fibromyalgia etc
vitaminexpress.org/uk/magne...
Some people say it’s great for RLS. It doesn’t taste great but worth a shot. There are capsules too.
I get RLS very mildly (more noticeably after a drink of alcohol) but find magnesium malate very helpful.
Guineapiggy,
Yep Malic Acid combined with Magnesium is great stuff. Good to hear. I suspect you must be very sensitive to alcohol and maybe it affects your liver and detoxification, potentially bringing on symptoms.
A DEFINATE a cure to be had in Vitamins, minerals and nutrients ...
Magnesium
Vitamin D3 plus K2 mk7
Vitamin B12
Also
Water dispersible Vitamin E
........All of the above ( and more ) put an end to my restless legs ... as well as contributing greatly to my Daily regime of replenishing and strengthening my Immune System .
..... and I have Graves Disease. .. so its not only HYPO sufferers who have restless legs .
Just another little Thyroid blessing !! 🤗
Mx🌹
Have you tried going gluten free? It could certainly help reduce the twitches.
Well no..not really...I haven't..but worth a try.. thank you.
I would definitely try gluten free (GF). I am GF, when I once ate it inadvertently after a meal out, I developed twitches for a day or two, which thankfully passed. You’ll probably know within a few days if GF works, but always worthwhile trying GF with hashimotos, as many people on here will tell you.
Good luck!
Right...I'll put that on my list of "cures"..
I'm currently taking cbd oil...but D spray...a plastic "nail" bed..5 htp serotonin...
Calming tea... and eating more peanut butter..
Thank you..
The lack of sleep has brought on high blood pressure..
Definitely try magnesium for restless legs - It made a huge difference to me (with Hashimotos) and my mum who had restless legs for years! I take a larger does than is recommended and take it going to bed with Zinc. I also use Magnesium salts in my bath - it helps with cramps, eases muscles and aids recovery after exercising - and reduces restless legs - can't remember the last time I had an issue with it - have been supplementing with magnesium malate tablets for 4 years now! Hope that helps
In the meantime you could try an antihistamine to help you sleep. I had insomnia for a different reason and have gone from 3 hours sleep to 8-9 hours a night. Antihistamine probably saved my life! If it’s giving you high blood pressure, you need to find a cure, even if it’s temporary. I now have low blood pressure! My GP told me that my antihistamine is fine to take daily.
except that if it's a first generation antihist it may give you side effects after a year or so.......
There is a Facebook group that I have joined - facebook.com/groups/restles... . I have posted a link to this thread on it. I think this correspondence could be a game changer for both sets of suffers - and hopefully me - I have both problems myself - I think they have been worsened by Covid reducing my autoimmune system.
Hi, Janland, it may have nothing to do with hypothyroidism but you could be intolerant to certain foods. I had restless legs which drove me nuts, GP could not suggest anything, so I did some research on food intolerances and found that I was intolerant to milk and wheat. I cut them out of my diet and the restless legs were gone.
I also got extremely hot at night, that also disappeared.
There are some books on food intolerances, you might ask in your library.
Hope you find your answer soon.
giselajames
Hi, daft question time but how did you find out you were intolerant to milk and wheat, how did you get tested or was it process of elimination from reading?
I'm asking because I've not had thyroid blood checked in almost 12 months (though reading comments on here, not convinced I've ever had in depth thyroid check, was just one day told I need to take levothyroxine) but more so since having been ill with covid in March my body aches more than ever, fatigue is awful, my upper body lymphoedema is like a brick, restless legs are more frequent (as in not just at bedtime) right foot is numb to touch and tingles constantly. I feel like hands are swollen but they're not!.... Weird feeling to describe. I'm at end of tether with chronic pain and no chance of speaking to, let alone seeing, GP - told last week I'd only get to have telephone consultation with nurse. Not sure if I should make appt with nutritionist or ilk, can't really afford to but my mental health affected badly because of physical body and I'm really struggling to keep going.
Hi Broomie hang on in there 🤞 I feel your pain. I am struggling massively too with so many symptoms and aching joints & muscles. I feel like every few days I get more symptoms and sadly no relief from all the dietary/ lifestyle changes I am making. Like you my mental health is being affected massively with the lack of sleep and high anxiety these constant physical symptoms cause me. I am in the process of trying to find root causes by trying some private tests as I am getting nothing but prescriptions from doctors which dont work and cause me more side effects. Just got to keep the faith and pushing forward for answers as you know your own body more than anyone reading g some lab results. Which tbh if they only use an nhs test is very limited what they check anyway. Read as much as you can on here , as the advice and tips are amazing support. Hope you get some relief soon. I am on a waiting list for some CBT counselling so hope this will help balance out my stressed adrenal glands. All the best 🙏
TrishG67 thank you for responding. I had just started opening up in trauma therapy then covid kicked in with lockdown and everything stopped dead, this hasn't helped mental health.
Good luck with your private testing, if be interested to hear how it goes, if you're up to sharing. Cbt is good, as is nlp. Best wishes xx
Hi, Broomie, I went to the library because my doctor said I should take ibuprofen for all my symptoms like inflamed joints, swollen and rest leg legs etc. I found a book, I can’t remember the author, and he described all my symptoms and the answer was ‘food intolerance’. You then go on an elimination diet and only eat courgettes, oily fish, sweet potatoes for all Your meals ( bit crazy, I know) and you are allowed fruit like pears and peaches for a week, and all my symptoms vanished. I then was tested by a friend of mine and tested positive for milk, wheat, gluten, bell peppers, cut them out of my diet and hey presto!
Have a look on google to see what they come up with by way of literature on food intolerances.
Ask your doctor to give you a blood test for polymyalgia. The symptoms sound very like it.
I do hope you will get better soon.
Kind regards, Gisela
Thank you so much for all the info. I'm going to list everything over the next couple of days and research some stuff then make (or really demand) a double appt with gp. My gp is usually great but it's getting by the new system to see her that's been the problem. Thanks again. X
yep many docs appear to know little.....
I developed restless legs last year when my ferritin dropped from 65 to 36 in space of a couple of months ( Low stomach acid maybe) the GP was less than sympathetic and told me that it was something I would just have to deal with and refused to prescribe iron tablets as my ferritin was in range (barely). I bought iron tablets over the counter and took with dissolvable vitamin c and the RLS all but disappeared within a couple of months. My ferritin is now 89 and I’m monitoring every 6 months by private testing, ( I’m not taking any Iron tablets at the moment) I’m taking betaine HCL every day to keep stomach acid levels up so hopefully won’t get this problem again.
From reading I’ve done there is a definite relationship between low ferritin and RLS.
Hi Janland,
I had food intolerance tests from smartblood.co.uk. Once the results are in you book an appointment with their nutritionalist (included in the price); the person I had was really helpful and a lot of my leg and digestive problems are now resolved.
I believe that smartblood sometimes do vouchers which can help with the cost.
I am intolerant of wheat and cow's milk and a few other things. I replace cow's milk with goat's milk and that is fine for me.
All these Thyroid problems are a pain in the proverbial but keep plugging away and things should improve, with the help of the great people on here.
Hugs and positive wishes for you,
Sarfran.
I had RLS when my levothyroxine dosage was deemed to be too high; at a lower dose, my RLS symptoms went away.
That's interesting... because of bad restless legs..I took less levothyroxine... thinking it would help...but in the long run it didn't....
So after a few months...I took the full dose again... and restless legs went away for a week...I really thought I'd cracked it..
But have had restless legs.. and periodic limb movement back again with a vengeance..
I sometimes think...its all a very fine line and things have to be balanced precisely.
I think you’re right about that. You might also have your vitamin D levels checked, if you haven’t already. Sorry if you’ve already discussed that. there is at least an association between vitamin D and RLS (see: Wali et al. J Clin Sleep Med. 2018;14(4)557-564.).
If you have a true deficiency, the usual course of treatment is a high dose supplementation for a week, something like 50,000 units a day, I think. Then supplement with a regular maintenance dose, which is what I do. I take a combination vitamin D/calcium plant-based formula.
There’s also a possible association between RLS and vitamin B12. You might want to supplement with that also. Luckily, that’s one of the vitamins that you really can’t get too much of (unlike other vitamins).
Some medicines can be associated with RLS. These include certain certain antihistamine, antinausea, and antidepressant drugs.
Luckily, I only had RLS for a year or two. That was more than enough. It’s miserable. Reducing my levothyroxine dose had at least one positive effect!
Thank you once again..
It's certainly very miserable to have jerky electric legs all night every night for hours..the next day it's difficult to work at my best..
Not a lot of people understand..
Some even think it's funny..far from it when it goes on for years..
Thank you..
Several people here including myself have overcome the problem. My thoughts are that it's down to poor mineral absorption*. This links everything to the gut. It's not exclusive to hypothyroidism, but Hypos tend to have low stomach acid. Taking Betaine HCl with meals will help with mineral absorption. I take soluble vitamin C as ascorbic acid before meals (vitamin C helps adrenal glands) and it aids iron uptake.
Taking absorbable forms of Magnesium is very helpful. You can apply Mag lotion to your legs directly and take Epsom Salt baths before bed.
If insomnia is a problem then you may have a vitamin D deficiency (or B12 and folate) so get these checked. There may be a cortisol issue (adrenals) as well and many of us with thyroid issues really should get this checked. I believe zinc and p5p and Magnesium to be very helpful indeed for dodgy adrenal glands.
*This may be exacerbated by milk or wheat intolerance.
My wife and daughter are hypo and a lot of their problems have been more or less resolved by taking thyroid medication. But they both still get the restless legs thing if they don't take selenium regularly. Very effective, at least for them. Plus, selenium is good for the thyroid (if you have one!).
Yes! Selenium is very useful for the thyroid... It competes with Chromium (which helps blood sugar regulation), so I take 200% of RDA on alternate days to balance things out. And, like other metals (iron, zinc, magnesium.... etc) it is harder for Hypos to absorb, so supplements are pretty much a must.
Thank you.
I eat Brazil nuts, you need to check that they say high Selenium on them somewhere. I think that Seasidesuzie has a list of where you can get them. I use Aldi Foodie ones and Lidl ones. They have helped me.
🤓
It’s a really annoying condition. I know two people with restless leg syndrome but they don’t have thyroid problems. ( Though some on this site think everyone’s got a thyroid problem!). I’ve been getting this recently though quite mild compared to some - there was an excellent TV programme about it. Think magnesium and zinc help but otherwise ask your doc ...or of course Dr Google? I get it when can’t sleep and often thinks it’s cos I haven’t had enough exercise during the day. Good luck!
Thank you.
Hi Jan,
I too have suffered with RLS (have never had a thyroid) and it usually happens when something changes in my levothyroxine dose. It is always at about 2/ 3am that it’s at its worst!
I find a weighted blanket helps tremendously. It seems to override the sensation that I have to wriggle.
I hope you find what works for you. It’s a hideous thing to live with.
E x
Levothyroxine and restless leg syndrome!!
Restless legs
Restless Leg Syndrome
Restless legs and arms
