Levothyroxine and RLS

[Pam34]

Hello

I had a partial thyroidectomy last year and so far have managed without drug treatments. However my current symptoms (even more tired than normal if that's possible, foggy brain, weight gain etc) indicate that it may no longer be functioning as effectively. I'm having a blood test on Friday as well as them rechecking my ferritin levels and, having researched it, then I guess I may be offered levothyroxine.

I've looked at whether this may affect my RLS and have read differing reports. I'm just wondering what other people on here who have thyroid and RLS problems have experienced - thought it better to go forearmed! And if levothyroxine does aggravate RLS are there any alternatives?

Thanks

[Kaarina Administrator]

Hi Pam

I had a nodular goitre removed fifty years ago and I have been on levothyroxine ever since. I do suffer with RLS but intermittent and take no meds for it. I have to take levothyroxine, so that is that. With the symptoms you are experiencing it sounds like you may well feel much better on some levothyroxine. That is my story along with picking up osteoarthritis in various joints and osteoporosis along the way.

Good idea to have ferritin levels checked. When suffering from RLS the ferritin levels should be higher than what a doctor considers normal.

[Pam34 in reply to Kaarina]

Thanks Kaarina.

Part of me hopes you are right and that levothyroxine may help my current symptoms and part of me is anxious that it may exacerbate my RLS - I really don't want it to get any worse! My ferritin at the last check was 79 and the neurologist said it was ok to to raise it to around 100. I must admit when I first started taking iron (I'm off ropinirole - nasty drug! and so far have resisted anything else) I noticed my RLS improved enormously but it seems less effective now.

My experience with ropinirole was so awful I'm trying my best not to start the next drug recommended by the neurologist - pregabalin. I'm lucky that I don't experience any pain but I am up every night several times with RLS. See how long I can hold out.....

[Kaarina Administrator in reply to Pam34]

Pam, I have not read that taking thyroxine can make RLS symptoms worse........

[Hidden in reply to Pam34]

Pam if the iron is pooping out or your RLS is ramping up because of thyroid med then u might need to increase dose of Iron. I always recommend taking iron before bed on an empty stomach. I take just one 25 mg capsule but I see a couple of people on here taking 50mg.

[Hidden in reply to Hidden]

By the way I tried ferrous sulfate but it just didn't do the trick like ferrous bisglycinate.

[ELLSBELLS]

Hello Pam

I too have recently been diagnosed as hypothyroid and started taking levothyroxine in January this year. The only side effect I have noticed is that whereas before starting Levo I could tolerate proton pump inhibitors they are now on the list of things that aggregate my RLS. If I was still taking them, as prescribed, I would have to have doubled my present dose of DHC and this is not an option for me. The Thyroiduk site on healthunlocked has lots of good advice and it is suggested that all those with hypothyroidism should have vitaminD3, folate, ferritin and vitamin B12 tested and the results should be near the upper quadrant of their ranges.

[Pam34]

Thanks for this. It's useful to know that hopefully the levothyroxine will not worsen my RLS.

I have my blood test tomorrow and I suppose the results will determine whether I need the drug or not. I'll check out the Thyroid UK site. Thanks

[involuntarydancer]

It is tough to be wakened several times a night. Pregabalin works in a completely different way from ropinerole (well done for getting off the ropinerole - it is truly awful). There is no relationship between the two. Pregabalin doesn't work for everyone and it does cause some unpleasant side effects in some people but it just might work for you. If it doesn't work, it is not difficult to discontinue - you just titrate down until you stop - you don't get any awful withdrawal symptoms. I think it might be worth trying it if you have it.

I presume you are aware that the other pharmaceutical option for treating rls is opiates - codeine (I think you can buy co-codamol over the counter) and tramadol are relatively effective and then there is oxycodone for more severe cases.

It is definitely also worth looking at your iron levels and as tredlight has said some people get immediate relief when they take iron bisglycinate at the onset of symptoms. For me it was a more gradual process but bringing up my iron levels by taking oral iron over many months helped a lot with the severity of my symptoms.

[StanNer]

Put a weighted blanket on your restless legs.