Levothyroxine and restless leg syndrome!!

[Vjdhkf]

i have always suffered with restless legs, but since being diagnosed with under active thyroid and being put on levothyroxine it is every night and unbearable! Has anybody been successful in changing medications? If so what can I ask my gp to change me too

[Diane17884]

Hi 😊 I don't have any advice regarding the levo but have you tried magnesium before bed for restless legs?

[jimh111 in reply to Diane17884]

Yes magnesium citrate or other forms that are recommended, not magnesium oxide or hydroxide.

[Vjdhkf in reply to jimh111]

I had tried magnesium mixed with zinc and something else I can’t remember, I have just ordered magnesium citrate now so here’s to hoping it makes a difference for me, thankyou

[Vjdhkf in reply to Diane17884]

I have tried everything 😔 thought with the medication being an effect changing it might be my only answer x

[Diane17884 in reply to Vjdhkf]

Aw I'm sorry to hear that. Hopefully someone else can advise with the medication x

[Vjdhkf in reply to Diane17884]

I’ve ordered some magnesium on it’s own the one I tried was mixed, would I take this an hour or so before bed? I also take my Levo before bed are they ok together x

[greygoose in reply to Vjdhkf]

Ideally, you should take magnesium six hours away from levo, but at least four hours apart. They most definitely are not ok together.

[Vjdhkf in reply to greygoose]

Ar thanks for that, another timer to add for another pill 😴

[greygoose in reply to Vjdhkf]

'Fraid so.

[jimh111]

Take your magnesium away from thyroid medication as it can lower absorption a bit. I would tend to take two tablets, maybe mid-morning and early evening. If you start to get loose stools just reduce the magnesium dose a little. It takes many months of supplementation to resolve magnesium deficiency so stick with it. Magnesium blood tests are no use so don't think of it, nearly all our magnesium is in bones and tissue not in blood.

[Wildbird]

According to NHS choices, restless legs is a secondary effect of hypothyroidism and should therefore resolve with the correct treatment. I have it 24/7 and have never found anything such as magnesium, to make a difference. Levothyroxine may not be the cause but as the only treatment available, it certainly is not the cure! I have yet to meet a GP who is aware of the connection to hypothyroidism, so perhaps that’s why we are left to suffer in silence. I believe that anti-Parkinson’s meds can be used as a treatment but these can lead to a worsening of symptoms after a time, so not an attractive option.

[Vjdhkf in reply to Wildbird]

I was prescribed the ropinirole and it made me so sick!, I have read many forums and tried so many different things I wish they would see the connnection I walk round work punching my legs its so bad!😣

[janland in reply to Wildbird]

Hello..

I have just come across your letter re rls and thyroid problems.

I have had rls for years now..plus taking levothyroxine for hypothyroidism..

Just lately restless legs have been much much worse making sleep practically impossible..

I take 75 mg of levothyroxine each night..

(Also on amlodipine for high BP)

Have you any suggestions if I should lower or higher dose..?

Possibly an endocrinologist would help..as doctors don't seem to help much..

Would love to hear from you with any advice.

Thank you

Jan

[Wildbird in reply to janland]

Hi,

I can see that restless legs is exhausting and hard to handle. I do not think that levothyroxine makes the symptoms worse, though if your dose is too low, a rise may help. I take pregabalin for an unrelated health issue and that does help a little with the symptoms, enough to aid sleep. Perhaps your GP might be able to prescribe something similar.

[janland in reply to Wildbird]

Thank you for your reply..

Yes..I was cautious about pregabalin at first because of any side affects..but its the dopamine agonists that lead to augmentation I've now found out.

Last Friday I actually managed to speak to a doctor who told me to stop the amlodipine...bp tablets...

Which I have done...so far legs slightly less restless...

But my sleep is far from perfect... waking up numerous times in the night and hardly any deep sleep..

However..I now have to watch bp level...

It's periodic limb movement too that I have...

It all leaves me washed out and tired for the day... exhausted.. hopefully things will get better..

Yes...I'm trying to take lowest dose of levothyroxine that I can..

The doctor did suggest he might have a tablet that could help...but I told him I wouldn't want anything that might lead to augmentation..

I thank you for your help....

Best wishes

Jan

[Wildbird in reply to janland]

I can tell you that from my own experience, pregabalin has not made my symptoms worse and I’ve had twitchy, writhing feet and legs for years. It’s a much ignored syndrome, like many neurological problems. I wish you the best in your search for relief.

[greygoose]

How's your iron/ferritin? I believe low iron can be one of the causes, but there are actually many possible causes.

[Vjdhkf in reply to greygoose]

I’m not too sure would that of been included in a full blood count? I am vit d deficient which is another cause but I’ve been taking tablets for that for over a year and no difference

[greygoose in reply to Vjdhkf]

I very much doubt if it would be included - or even that your GP would understand the results if it were. How much vit D are you taking?

[Vjdhkf in reply to greygoose]

800iu, That was stable last week though, the legs has been a nuisance since being diagnosed and put on Levo last may, I don’t think anything will cure them without stopping these and feeling awful again 😣

[greygoose in reply to Vjdhkf]

That's a very small dose of vit D, and not likely to do anything to raise your level. What was your level when it was prescribed? Have you had it tested recently?

[SilverAvocado in reply to Vjdhkf]

That really is a miniscule dose. I take 3,000 international units, and just found my level reduced again over the winter.

Doctors will prescribe these tiny piddly amounts that don't change anything. You've got to take matters into your own hands to improve a lot of the vitamins. Vitamin D deficiency will be causing you a lot of problems.

[Wildbird]

You have my sympathy. In my case, it came with the under active thyroid and has never left. I am not low in iron, vitamin b or ferritin according to blood tests. I think that there is some connection between thyroid hormones and dopamine receptors. Dopamine seems to be at the heart of restless legs.... I do find it helps a little to stay away from caffeine.

[Vjdhkf in reply to Wildbird]

I don’t have caffeine either, Have you any tips for a full nights sleep 😂

[SilverAvocado in reply to Vjdhkf]

Have you tried Epsom Salt baths? This is my final defense for sleeplessness, restless legs and sore muscles.

Put in several hundred grams, or even a kg, especially if you want to find out of it works for you. I now buy huge tubs online, which is much cheaper than the shops, and put in about 5 big snowball handful.

This is another way of getting magnesium into the body. Spray bottles are also good, I saw you were talking about tablets above. I usually do 5 sprays on each calf and rub it in just before I get into bed.

Another weird remedy that I heard on the forum, not so much a recommendation, but just to try anything, is to sleep with a bar of soap under the covers with you. I feel like this might have helped me a tiny bit! Or even because it's something strange to do it gives a nice placebo effect to bother with it every night!

[Wildbird]

I’m afraid that I have just had to accept the eternal twitches in my feet and legs and try and tune out from them which is mighty difficult. I understand how stressed you must be as it is so exhausting. Sometimes playing music serves as a distraction, especially if you can find rhythms to match the restless sensations. I wish that there was more research into this, then we might find something that actually worked for us!

[Vjdhkf]

I know it’s so frustrating, I guess until a doctor suffers with it we will always suffer, I know the pills for Parkinson’s do work for some people but the side effects are unreal

[lidoplace]

I had tried most recommendations for restless legs but since taking NDT I have not suffered from it .

[Kimfalmouth in reply to lidoplace]

Can you tell me what ndt you take please...and where do you get it? Thanks so much.

[Spareribs in reply to Kimfalmouth]

A gentle reminder about forum guidelines and asking for replies by private message only - please make your own post to ask your question. You may find people will respond if you give some details about yourself e.g. your story on your profile.

healthunlocked.com/thyroidu...

Guideline 25.

Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription. This includes online pharmacies who issue 'prescriptions' on the basis of the completion of a simple health questionnaire.

[Vjdhkf in reply to lidoplace]

Can I have more info on this please

[Naomi8]

My husband gets this occasionally,though I am the one with Hashimotos.I did lots of online research & came across speculation that there may be a connection with low B12.Have you been tested?I understand that if supplementing with B12,it is necessary to stop that for at least 3 months before getting tested.

I take magnesium as magnesium bisglycinate,as it appears to be a bit milder on the gut.I also take iron bisglycinate & I think they balance each other out.

Take a look at the forum PA on this hosting site.

[WGVAL]

I have/had polyneuropathy (definitely not restless legs, but symptoms can be similar, did not react to Dopamin) which developed slowly in feet, legs , hands under Levo-medication for over 30 years. Only after my pains, tingling sensation etc kept coming on more and more and I couldn't sleep anymore and having seen all kinds of specialist with little help, filing weak and at one point that I might end up in a wheel chair if things don't improve,I started to substitute Selen, B12 and B-complex (slightly better sometimes, foot reflexology massage (which helped a lot), then gluten-free and substituting Magnesium,D3, K 2 Vitamin C, Omega 3 ,P5P, Iron, making me feel a lot better. In March I switched to NDT (Thyreogland ) , still had cramps now and then, getting better while adjusting the dose. I am now at 2 1/4 grain, my average temperature is between 36,8 to 37 degrees as suggested by Thyroid alternative specialists and I feel that my legs are almost back to normal. I will have a blood-check soon also to check specific hormones (I am post menopause). The good effect of all this is that I am back to my normal weight that I had before my Hashimoto problems started with weight gain ( I lost 6 kilos, only wanted to lose 3), my energy is coming back, I sleep well. (Had terrible times feeling becoming psycho, depressed, crying, weak).I'm almost back to my happy self at now 66. I surely feel with anyone with all the symptoms connected with thyroid problems. I am lucky to have found 2 doctors who go alternative ways and support me. But believe in your body, it can do so much for the better if given the right things.

[WGVAL]

And I forgot: I use magnesium oil ( which I make myself from magnesium flakes) 2 times a day on my legs and arms and also footbaths with magnesium flakes. This way it is much better absorbed than orally (only 30%) and you don't have digestion problems. I also took magnesiumglycinat , which is better absorbed and doesn't give you diarrhea.

[SlowDragon Administrator]

What are your TSH, FT4 and FT3 results and ranges

What dose of Levothyroxine are you taking

Do you have Hashimoto's (high thyroid antibodies)

Important to retest vitamin D, very likely 800iu is too little

Also test results and ranges for folate, b12 and ferritin helpful

[Daffers123]

I had dreadful RLS too and I narrowed it down to taking Amitriptylene (stopped of course) and more recently when i tried to increase Mirtazapine to 15mcg. Can only tolerate 7.5. I wondered if a different brand of Levo might help - could it be the fillers and binders ? The only brand of Levo I can tolerate is Wockhardt in the 25mcg size. I have seen info on here which indicated that Wockhardt 25mcg pills dont contain too many fillers

[superthyroidmom in reply to Daffers123]

it turns out I'm allergic to the red pills . (175)Levo

[Pippers]

OMG, I've taken levo. for years totally unaware of any connection to my fidgety legs... well I'm blowed! Also, I'd be interested to know how long others leave between taking levo. and D3? I was told a couple of hours but a friend leaves it more like 5...?

[Gates]

I have heard low red blood cell levels can cause restless legs syndrome, i.e., if you are anemic or close to it, taking iron may help.

Also, trying natural dessicated thyroid hormone with both T4 and T3 may help tell you if your low thyroid (or the levothyroxine) is a cause of the restless legs syndrome. If it gets better while on NDT, then possibly levothroxine, or the dose you were on, are not right for you.

[Vjdhkf in reply to Gates]

Can my doctor prescribe this NDT

[Gates in reply to Vjdhkf]

I am in the U.S. but have no trouble getting NDT prescribed here. I now take either Naturethroid or Armour dessicated thyroid. I tried taking just levothyroxine at different doses, raising, lowering, going off then back on, etc. but there appears to be something lacking in it that I and other people need.

My theory is that taking synthetic T4 only (levothyroxine) replaces your own production to a great extent, but since it is synthetic T4 it does not replicate everything we need, so leaves people short on T3, T2, and who knows what else.

B12 is necessary along with iron to prevent anemia, so you may want to have that checked also.

[Catseyes235]

Magnesium or Epsom Salts In your bath? You don't say how long you have been on thyroxine and if you're no longer hypo as may settle down then when stable.

[crimple]

I found that good levels of Vit B12 and Vit D (both at top of the range) helped quite a bit, but taking a small amount of T3 has helped a lot.

[LAHs]

I believe that hypothyroidism is related to restless leg syndrome (RLS) (and leg cramps - which are different). When I overdo my bike riding I am very well aware that my T3 gets used up faster. This puts my in a state of hypothyroidism until my next dose. This state, plus the fact that I have over used my leg muscles, gives me RLS that night. Vitamin B12 is also a factor, I have recently cut back on my B12 after discovering that it was about 1500 where >200 is given as normal (sorry can't remember the units). My B12 is lower than my normal and I recently overdid the bike riding so I am sitting here with pain in my legs following RLS and cramps I suffered about 3 nights ago! Not going to do that again.

[punkyb]

I started taking magnesium...

[anniem79]

Hi

I have always suffered with restless legs and feet and before I was even on levo and was forever showering my legs with cold water throughtout the night and now I'm on a combination of t4 and t3 it has amazingly stopped!

Have you had your T3 levels checked or a DI02 test to see if you have the Gene?

[madge1979]

Restless Legs ??

... thing of the past now for me since supplementing with Magnesium and water soluble vitamin E ... such relief !

Try it and see .

Luv x🌹

[Furface]

Sadly Levothyroxine is not the successful drug Drs make it out to be. For me, it made me worse though they told me my numbers were good so I am fine. Because I told them I was worse, not better, they took it away and left me with nothing for fourteen years. Last year, I did my own research and saw a natural Dr who despairs of conventional medicine with thyroid patients. He prescribed NDT. That began the start of improving at last after many years of no treatment at all. Might it be worth considering NDT as you may feel better on it. Gives you more energy too 😊

[Vjdhkf in reply to Furface]

NDT how can I get that? It’s what everyone is saying is better

[helvella Administrator Thyroid UK in reply to Vjdhkf]

There is a saying - horses for courses.

Not everyone does better on desiccated thyroid. Some might do better just adding some synthetic T3 to levothyroxine.

If we truly understood all the available thyroid hormone products, and how best to select and take them, we'd be a lot better off. But we don't. We end up having to read, think, guess, try. And be willing to make all sorts of adjustments until we get to the best place for us.

[superthyroidmom]

I found that it was the tylenol I was taking to feel less pain, was causing the rls horribly. try removing tylenol. My best med combo, 150 synthroid with 2 gabapentin every morning and 1 trazadone for sleep and mood with 2 more gabbies and I have become funtional in society again. I did have problems with the RED levothyroxine(175 I just threw them up within 30 min)

[Sallie66]

Hi, I suffered from restful legs, but was mainly at night time. I did some research and ask a Crystal Healer what crystal stones helps with restful legs and he told me to try Red Jasper . He said to put it at end of bed under the sheet and it should make them better. Well it certainly has help, I don't have them so much now.

"Red Jasper comprises of healing anti-inflammatory vibrations that dispel severe disorders including, sciatica, painful swelling, restless legs & other disorders associated with the leg". Anything is worth trying. Blessings,

[DaisyMax]

Same problem. Just found this article and sent to my doctor.

omicsonline.org/open-access...

[Cbad57]

I suffer fro RLS myself and it has gotten worse since being on levothyroxine. My personal care physician prescribed mirapex and it works with no side effects that I can see.