Restless Legs: I have Graves Disease, only... - Thyroid UK

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Restless Legs

madge1979 profile image
17 Replies

I have Graves Disease, only diagnosed 6 months ago, however for years I have

suffered from 'Restless Legs ' .

Because of my thyroid problem , I took advice on this site and started to take

supplements ... B12 and D3 and Vit.E are three of those I take now... and I thought it may be of interest to some fellow sufferers that my 'restless legs ' ... are no longer a problem for me ... It may be worth trying , as long as you check with your GP , of course.

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madge1979
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17 Replies
Jose651 profile image
Jose651

Hi Madge,

Thank you for that post. I too have RLS since I was carrying my 1st baby, 27 years ago. It's a nightmare but thankfully I don't have the level of pain that some members on the RLS forum suffer from.

I have an underactive thyroid and B12 deficiency and believe there is a connection.

I'm glad that you have found relief with the Vitamins you are taking. Long may it continue.

Have you posted on the RLS forum? I'm sure they would be interested.

J

Pixielula profile image
Pixielula

My restless legs have gone since being on b12 shots ....... Woohoo

Rennixon profile image
Rennixon

Thank you Madge for sharing this, I too have restless leg & it drives me crazy. I'm also hypo & due to see the endocrinologist next month, I will add this to the arms length list of symptoms I suffer from. I'm planning with the help of the wonderful people on here to act as soon as I can with supplements, so fingers crossed it works for me too.

Good luck with your appointment

Rx

in reply toRennixon

What is your ferritin level Rennixon?

Rennixon profile image
Rennixon in reply to

VitB12 477ng/L(190.0-800.0)

Folate 15.5ug/L -above range

Ferritin 23ug/L

T4 13.9

TSH 2.1

No free T3 as TSH level has gone up?

These are my last results from January this year. I plan to get vitD tested too, but bin aware the levels are not good for my iron, more work needed😐

Rx

in reply toRennixon

Rennixon, RLS is strongly linked to low brain iron. Work to get your serum ferritin up, definitely above 60, try for higher,the Johns Hopkins unit on rls takes patients up to 100.

Take your B12 up too and personally I'd try some antioxidants as well. Vit C up to tolerance, for example.

Rennixon profile image
Rennixon in reply to

Aspmama

Thank you, I will add this to my list. I want to get the endo appointment out of the way & have bloods done so that I know the levels & then start supplementing any deficiencies. Booked in for bloods so we will see what comes back

Rx

Have you also been taking iron supplements Madge?

madge1979 profile image
madge1979 in reply to

Aspmama no.. I don't take Iron .... as I don't have a need to. 🌹

in reply tomadge1979

What is your serum ferritin madge, and did you have a period in the past when the rls began when it might have been low? Only asking from interest in the subject.

in reply to

Also D3 seems to have a connection with iron absorption. The other piece of research on rls, which is an area less covered than the iron research, showed high levels of glutamate in rls, which could also link to less brain iron, ie, inflammation in the brain might trigger excess glutamate, the brain blood barrier would then likely keep the iron admitted to the brain low because it would increase the inflammation.

I'm trying to work out which of your supplements might help here... D3 is also necessary for the body to make a major antioxidant, and E I think is an anti oxidant itself... what other supplements are you taking?

in reply to

OK, I think it may be the treatment for Graves itself, not the supplements, which has cured your RLS. Study by EK Tan et al, 2004' RLS in thyroid disorder, eight per cent or 12 of 146 thyroid patients newly diag had RLS, interestingly 11 of these had Graves, four of these had their RLS go away completely with treatment, the others saw some improvement.

So not necessarily the supplements, though some may have helped. Very interesting....

Pastille profile image
Pastille

Great news thanks :)

madge1979 profile image
madge1979

...  In my case ... 

I am sure that the B12 taken with B Complex  and also Vitamin E and D3  have actually stopped my Restless Legs 

in reply tomadge1979

ok but could you explain why treatment for the graves is discounted? I am not being hostile, just very interested in the subject. Found an in interesting study which suggests that a minority of those with graves also have antibodies to lactoferrin, which could explain the minority in graves with rls. not that anyone will have got funding to look at that, I suspect.

madge1979 profile image
madge1979

the only Treatment I have had for my Graves Disease is Carbimazole ... do you

think that has taken away my restless legs problem ?

madge1979 profile image
madge1979

before I knew I had Graves Disease .. I suffered from Restless Legs ... for years ,

I read  ' somewhere '   that Water Soluble Vitamin E helped ..  so I bought it 

and when I went to bed at night would take 2 ...  it worked !   my vitamin B12 was fine 

at the time ... it was so good I bought some for my friend who has No thyroid !

and it worked.  ( didn't know then there was a connection to thyroid )

Although I say it worked ... I would only take it when I really couldn't stand it (RL)

and it did come back when I forgot to take it .

However, now I take it daily with B12 and B complex ..... it's gone !

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